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Jared was born on 4 January 1994 at 4:56pm with Spina Bifida. We fell in love with him the moment we laid eyes on him. He was beautiful!

When he was about 12 hours old he had neurosurgery to close up the lesion on his back. While in the womb his spinal column had not fully closed and so the spinal cord was exposed and sticking out of his back at waist level.  Jared had neurosurgery when he was 3 weeks old to have a shunt put in.  After 6 weeks in hospital we went home only to be back in hospital 10 days later because Jared was losing weight. He wasn?t getting enough milk. I just was not a good dairy mum. So we started supplementing him on top of the breast-feeding. There were a few hiccups from time to time. At first I had to take him to the Spina Bifida Clinic at the Royal Children?s Hospital once a month. I always found that very draining, as I had to see many specialists who all seemed to dump bad news on me. They would say things like this or that will probably happen, until one day I said, ?does it happen to all of them?? ?No?, ?Is there anything I can do to prevent it?? ?No? ?So then don?t bother telling me about it unless it happens. I don?t want to know about it, if it might not happen, unless there is something I can do to prevent it. ?

After that clinic things were so much better. There were still days when I would just want to cry, and I wished Matt could be there with me, but they were too frequent for him to be taking days off work. It was during one of these clinics early on that I was told that I would need to start catheterising and gloving Jared. I found that very depressing. I wanted to be a mother, not a nurse doing medical procedures. However I got used to it pretty quickly and Matt and I shared the responsibility. I arranged for the Hospital to give him a lesson so that I didn?t become the only expert on everything and this way we maintained equal footing. Thus all our care was shared, it wasn?t left up to me because I was the one that knew most about it.

Once all this was over it was smooth sailing. I had weekly physio and exercises that we had to do with Jared, and then monthly clinics, and Spina Bifida play group each fortnight. That was wonderful to be able to mix with the staff and mothers who knew what you were dealing with, and could offer suggestions.  We enrolled him in swimming at 6 months and he was a real little water baby.  He was a very loving happy little man. He was so good, a very easy baby to have. We could go out to restaurants, and he would be happy to sit and watch and listen and play with a few toys. We had Managers of restaurants come out and comment on what a wonderful baby he was. He made an incredible variety of noises. His animal noises were a source of entertainment for all those who saw him. He gurgled so much we thought he would talk really early. He didn?t talk until he was 2 but then it was so clear and beautiful to hear. He started counting at the same time. By the time he was three he could count to 100, in 2?s, 5?s you name it. He was mesmerised by time, and would sit watching the clock on our bedside table for ages. He would get really excited. ?It?s 5:43 and next it?s going to be 5:44? We gave him a little calculator that beeped, as he always wanted to play on our computer keyboard. So we gave him a calculator as it had buttons. He had a beautiful singing voice and repertoire. Then at about 4 he must have become aware that all eyes were on him and he point blank refused to perform. He only started singing again when he was 8.

When Jared was 2 he started having severe headaches sporadically. He would be screaming and holding his head back to relieve the pressure. We?d take him to the Hospital and they would admit him, only to send us home 2 days later because he was okay again. This went on with regularity for about 6 months until finally they had decided to do a quite serious operation called cranial cervical decompression. At the last moment they decided to do a shunt revision first. During the operation they discovered that not only was the shunt catheter blocked, but also the valve was faulty. 3 days later he went downhill fast. They raced him into an emergency operation and found that the new shunt wasn?t working, so he had to have another one put in.  Each time we were very blessed. Jared was released a week later and he had been in intensive care for 24 hours of that. His doctors were always amazed at his fast recovery.

At the age of 2 Jared got his caster cart, which was affectionately known as ?the chariot?. It was basically the same as a wheelchair except it was low to the ground. It was made from a plan from the Spina Bifida Association out of an old car seat and some golf buggy wheels by his father and grandfather. The moment he got into it, he knew what to do and he was off. He was like Evil Knevel in that thing, and was in it practically night and day. His world really opened up. It was lovely to see. He got his wheelchair at 4. I wasn?t too thrilled as I was trying to avoid things that would label him as disabled, but it was inevitable.

Jared is an important member of our family. He has taught both his sisters to count and is in the process of teaching Emily to spell. They generally play well together, but still have disagreements. When he wants to be helpful he is the child from heaven, yet he can also really push our buttons at the other end of the scale when he wants to, as can the other children.

Yes, life would have been so much easier if he hadn?t had these trials and challenges in his life. But it wouldn?t have been better not to have him at all. If we didn?t have him we wouldn?t be who we are. He has been a blessing in our lives, a learning curve that has made us grow. Each time he goes into theatre I worry that we are going to lose that little soul. That little fellow who says ?I love you mummy, goodnight? as we turn off the light each night, and who wants nine kisses and sneaks in another one for good measure.

He is a very special child gifted to us from God. He?s ?my precious boy, my pumpkin pie, my honey bunny, my snoogle doo, my ginger beer, my gorgie porgie?. He?s my son!

In January 2002 my husband Mark and I fell pregnant with our first child. We had been married for just over three years and decided we would love to start a family. After being told I would have trouble falling pregnant we were very surprised we fell in the first month. Everything was going along quite normally, four months of bad morning sickness (all day sickness) and obsessing over what food I could or couldn?t eat and of course no drinking or smoking or being around anything that could harm our little one.

We had been talking about having children for some time and were over the moon that it was going to happen. I was so excited yet at the same time constantly feeling that something wasn?t right. I think a lot of first time Mums must feel that way but by 20 weeks we hadn?t bought a thing for the nursery or our little bubby. I don?t know why but it just didn?t seem right to create a nursery just yet.

Our worst fears were confirmed at our 20-week scan. After seeing pictures of the baby moving around and the sonographer going along like everything was OK, she said she wanted the baby to roll over, so could I go to the toilet and she would be back soon. About 20mins later she came back with another person who had a look, then turned to us and quite bluntly said the baby?s? stomach is where it shouldn?t be it has a Diaphragmatic Hernia and is probably Down Syndrome you will have to go to the Mater and decide what to do. (After everything we have been through over the past year and a half I still think this was probably the hardest day).

The four-day wait for our appointment at the Mater was excruciating. It was actually going to take two weeks but my Obstetrician pleaded with them to make it shorter.

Gabrielle?s CDH was confirmed at the appointment and they sat us down and explained to us that her stomach had slipped up through a hole in her diaphragm, pushing her heart against her right lung and her stomach pushed against the left lung.

They explained to us that the chance of Gabrielle surviving was 40% as her lungs wouldn?t have room to grow and the blood vessels that pass through her lungs may not be able to cope.

We had an amniocentesis done to rule out Down Syndrome and other genetic problems so we knew what we were dealing with.  This was another painful wait of about two weeks but the tests all showed negative.

It was hard for us to go through the next four months looking at baby clothes and furniture not knowing whether to buy them or not and finding it difficult for the excitement to out way the fear of what was to happen.

Gabrielle was born on October 16 2002 by caesarean section.  My sister and husband had flown up from Melbourne and all the family were waiting around to meet her.  Gabrielle was the first grandchild in our family of 6 girls so you could imagine the waiting room.

At 2:45pm my obstetrician held up a beautiful 8lb 10 baby girl.  She was whisked away to be worked on and taken straight to the ICN.  When we went to see her she looked so healthy and beautiful, the only way you knew she was so sick was from all the lines and machines hooked up to her.  The doctors gave Gabrielle drugs to keep her paralyzed so it was really hard not seeing her move, open her eyes or being able to hold our little girl ? things so many parents take for granted.

Things were touch and go the first couple of days.  We had Gabby Christened two days after her birth, as things didn?t look good.  Somehow she hung in there and had the operation done to move her stomach back.  We weren?t given much hope of her surviving the surgery but somehow, once again, she pulled through.

The next two weeks were like a roller coaster ride; one day she was looking great and the next it didn?t look like she would survive the night.

We stayed with Gabrielle as much as possible going in at least twice a day and spending some nights on sofas in the parents? room.

One of the highlights was the day after Gabby?s operation when for the first time we saw her eyes open and her little toes and fingers wriggle.  After such hope we would again come crashing down with the news she was having another bad turn.  All we could do was be there for her, pray for her and come to terms with the fact that there was nothing the doctors could do; it was all up to Gabrielle.

On Melbourne cup day, November 5th 2002 we were phoned and told to come in and talk to the doctor ? of course we knew what this meant.  The doctor told us that we were just delaying the inevitable and would have to consider turning Gabby?s machines off ? something we could never have brought ourselves to do.

Gabrielle gave us the ?heads up? the night before when we were saying goodnight about 11pm.  She looked at us both straight in the eyes intently, first me and then Mark and we knew exactly what she was trying to say.

When we arrived at the hospital we could tell it was time for Gabrielle to end her fight.

We rang our families to come in and say goodbye.  We spent the next 6 hours talking with Gabrielle and telling her it was OK to go with God.  Thankfully she made the decision for us and peacefully slipped away ~6:30pm that same day.  For the first time we got to hold our little girl.

We know why things like this happen, because God needs special little angels and He needs loving parents to be with them for their short stay.

We love you so much Gabrielle, you have brought us so much joy, and taught us so many things, Thank you for choosing us.

Mummy and Daddy.

My Pregnancy 
My husband and I found out January 2003 that we were pregnant with our 3rd child.  My pregnancy was going well.  I was experiencing the normal feelings like morning sickness, tenderness in the normal areas.  I went to my first OB appointment in April to determine that I was pregnant. See I never found out till I was already 3 months.  Well they did the normal routine complete physical and all.  They also check to hear the heart beat. Which they could not find. Which I was not to nervous cause with my other 2 pregnancies my babies like to hide from the Doppler. So they did a ultrasound and found the heartbeat.  Well my appointments were going well with my midwife until the fatal week.  I was 4 months pregnant and 14 weeks to be exact.  I had went in for a ultrasound to determine the sex. Well the ultrasound Tech was doing the normal and checking the size of all the limbs and etc. Well the numbers were not adding up correctly for the week that I was at.  So the doctor sent me to a High Risk Office to get a better understanding of the situation. Well my husband and I found out our worst nightmare.  It was actually May 28, 2003 we found out our baby was not going to be normal. Her arms, legs, thighs, upper arms and etc. was not correct with the week I was.  The doctor said our baby was going to be a Dwarf and it was the lethal type.  So everyone there thought we should have an abortion. Well we decided againt that and continued the pregnancy. I did opp for a amnio though.  So Friday May 30, 2003 I went to have that done.  Three weeks had past and finally the results came back as saying that it was true, and that we were having another daughter.  With knowing that we kept the pregnancy going on.  At 28 weeks I went into preterm labor they gave me meds to stop my contractions and they worked. I was in and out of the hospital for the next few weeks. Well my last time in for preterm labor was a wed. and I went into full labor that same week on Friday the 12 of Sept.

The birth of Erin Alexandria
It was Friday September 12, 2003 and everything was normal for a Friday morning. My aunt stayed the night before so I was not alone. My husband had work the night before. I was having problems sleeping that Thursday evening though.  But when the morning came I was still having small contractions.  So my husband went on to bed and my aunt and I started our day with my other 2 children.  But 11a.m. came and my contractions were getting closer and hurting frequently.  So I walked around my house for an hour, then at Noon I called my doctors office and they told me to go to the Hospital. So I called my mother and my aunt stayed with my children.  My mother picked me up 15 minutes later. That felt like an hour waiting. But we got to the hospital between 12:45 and 1:00p.m.  They put me in a Triage room and put me on monitors. Well after the nurse checked me I was already 4 cm. dilated and she was on her way.  Well then I called my husband and he was on his way too.

Well they got me into a regular room and got me all set up.  My labor went fast so quickly I was not able to get a epidural. So all I had was Demerol in me.  When I sat up to get the epidural Erin’s heartbeat started to go down quick. So they got me on all fours and I delivered her before I knew what was going on. I remembered the nurse saying DO NOT PUSH. I told her I have a bowel movement and I just pushed her out. My doctor got there just in time. She was born at 5:03 p.m. It was only a 3 hour delivery.  She was a beautiful baby weighing 4 pds. 6 oz. and 13 inches long.  She was 6 weeks early.

The death and funeral of Erin
I got to see Erin before they took her over to the Children’s Hospital across the way.  A couple minutes her doctor came into my room after checking her over. He said that it was definitely Thanthopic Dysplasia and she was not going to make it. Well my husband and I had to make the decision weather to take her off life support or let her suffer and try to make it.  Well I said I wanted to hold my daughter and they knew my decision. So an hour later they brought her in and I held her, her daddy, grandparents and her aunt ( my sister) and friends were able to hold her too. Well her heart stop beating and she was turning blue.  We thought she had passed on, but she was still fighting and retrieved. But at 8:13 p.m. she did peacefully passed away in my arms never opening or making a sound. She only gasped for breath.  The next morning I woke up asking myself where my baby was.  My husband made her funeral arrangement that day too.  We laid her to rest on Tuesday September 16, 2003.  She is now peacefully resting at Chesapeake Memorial Gardens in Chesapeake, VA.

God Bless,
Halee D. Rosser
MattHannahErin@aol.com

I’m Lynda, a full-time mummy to Chloe Eleannah Jayne (born August 1998), Phoebe Grace Emily (born August 2001), Angel Scott Ian (born sleeping 23 October 1992 – Hypoplastic Left Heart Syndrome) and Angel Elliott David (born sleeping January 14, 2000 – Potter’s Syndrome). I?m married to David, and we live in a small mining community in West Yorkshire, England. Here is the story of Elliott?s pregnancy:

David and I had been trying for another baby for a few months, but got to the stage of thinking ?it?ll happen when it wants to?. In August 1999, two days after my daughter Chlo? first birthday, I had the feeling that I could be pregnant. I did a stick-test straight after lunchtime and, racing downstairs from the bathroom, bounced into the Lounge declaring with glee ?I?m pregnant!!?

My first booking-in appointment with one of my Community Midwives was on September 17, 1999. Everything seemed well. I didn?t wish to use the local hospital, Pontefract General Infirmary, as I did not like the facilities there. (I had Chlo?at Barnsley District General Hospital in the adjoining County to where we lived, and wished to return there to deliver my next baby. The level of care I received at Barnsley was excellent and I had already built up a level of trust with the team there). However, I was persuaded not to do this; I was informed that the facilities at Pontefract had improved and, accepting the advice given, I booked to deliver my next baby there.

The following week, at 11 weeks pregnant, I was at the hospital for my routine appointment to see the Consultant, under whose care I would be for my pregnancy. My Consultant was not available, and so I was seen by one of the doctors on his team. I went through my obstetric history and no notes of concern were made (although I had already experienced losing Scott in 1992 and also experienced an early miscarriage in 1996). I was told to make an appointment for March 2000, when I would be 36 weeks pregnant. This would be to discuss birth plans and make any other necessary arrangements. I thought that, as they did not make any other arrangements for the handling of my pregnancy, then they must be confident that all seemed well. I therefore put my trust completely in their abilities.

Everything was going really well during Elliott?s pregnancy; the usual morning sickness was there (though it lasted all day), my boobs became these two enormous missiles on my chest, and my tummy got more rounded and maternal. My baby was starting to kick and roll around in my tummy – a wonderful feeling as any mother-to-be will tell you. The baby absolutely loved bath-times; splashing the water on my bulging tummy would set the baby off kicking like mad! I was really looking forward to the following Easter, when my baby would arrive. I attended all my ante-natal appointments at the clinic and was really starting to ?bloom?. Being pregnant really ?suited? me. I was radiant with admiration for this little life growing inside me.

I went to Pontefract General Infirmary for my first anomaly scan when I was 20 weeks and 3 days pregnant. I was told that all appeared ?fine?, but that I should return in two weeks? time, ?just to have another look?. Two anxious weeks passed. I was now 22 weeks and 3 days pregnant. On this occasion, I was told that the amniotic fluid was ?reduced? (although it was not stressed to be of any importance). Additionally, a proper view could not be obtained of the baby?s heart. In view of my previous obstetric history (Scott Ian died in-utero of Hypoplastic Left Heart Syndrome in 1992), I was told to return in another two weeks? time for another scan.

Before we knew it, Christmas was fast approaching. We would have to be making decisions soon as to when to move Chlo?out of her cot and into a junior bed in her new bedroom, so as to leave the nursery free for the new baby. We wanted to make the transition as smooth a transition for Chlo? so that she wouldn?t feel ?left out? when the baby arrived. We planned to start renovating a new bedroom for Chlo?in February 2000, thus giving her two months to get used to her new room before the baby arrived.

January 3, 2000 came. I was now 25 weeks pregnant. David, Chlo?and myself again returned to Pontefract General Infirmary for the ultrasound scan. We left the hospital very disappointed. The baby had moved to a transverse position, which made viewing the baby?s heart difficult. We were told that I would have to go back to see the Midwife, who would then have to go through the formal referral process and speak with the Consultant at Pontefract General Infirmary about the possibility of my being referred to Leeds General Infirmary. At Leeds, they would be able to get a more accurate view of the baby?s heart by carrying out a fetal cardiac scan. Other than that, we were informed that everything else was fine with the baby. The Midwife contacted the Consultant and we were to see him on the following Wednesday, January 5, 2000.

January 5, 2000: Again, the three of us (David, Chlo?and myself), trundled in the freezing cold weather to Pontefract General Infirmary for our early appointment. After waiting what seemed like an eternity, we got to see the Consultant. He agreed to refer us to Leeds General Infirmary, some 9 miles away, so that a proper view could be obtained of the baby?s heart. We were to be seen as an emergency case that afternoon.

As soon as we arrived, I was called into the ultrasound scanning room. Immediately, I was asked if I had been losing any fluid. I said most definitely not. Indeed, I na?ely stated that the only time I lost any fluid was when I suffered some stress incontinence after a long and difficult labour/delivery of my daughter, Chlo? With the scan completed, we were told to wait outside in a room opposite the Waiting Room.

Some time later, we were joined by a Consultant. She said that she had some good news and some bad news. First the good news; the baby?s heart was perfectly formed and in fine working order. Then came the bad news – she told us that the lack of fluid surrounding the baby gave her some cause for concern, and that it raised questions about the development or functioning of the baby?s renal system. We were totally shocked at this news; completely knocked off balance. We were advised to have an ?amnio-infusion?. This is the reverse of an amniocentesis – fluid is introduced (by a long needle inserted into the womb) into the amniotic sac in which the baby is floating in order to obtain a clearer ultrasound image. We asked what the risk would be to our baby with this procedure and were informed that it would be around 1%; the same as with amniocentesis. After some consideration, we went ahead with the procedure, just so that we could be sure our baby was OK.

After the amnio-infusion, I returned to the ultrasound room for a re-scan. An extremely detailed scan ensued. I was so happy to see my baby so clearly on screen. Fingers, toes, a rounded bottom, a ribcage so clearly highlighted like a xylophone; I was admiring my baby and thought that it looked perfectly fine. Then the scan ended…

The Consultant put down the transducer and quietly said ?I?m so sorry?. I got up and leaned on the edge of the bed. Her words didn?t register. Again, she said ?Lynda, I?m so desperately sorry.? And then it hit me… I collapsed at the end of the bed and crumpled up into a heap of tears. I remember saying to her, ?And I suppose you?re going to insult me by telling me I?m losing another son!? She gently nodded her head. Walking towards me, she embraced me tightly and got me to my feet; her bright blue eyes pricked with tears…

I was led back to the room where David and Chlo?were waiting for me. David took one look at me and knew things were not looking good. We were sat down with the obligatory box of paper tissues and told that our son, Elliott (we had chosen this name before he was conceived), did not have any kidneys or bladder. We were mortified. Devastated. Completely and utterly bereft. We wondered how this could be? We had been told (and had scan reports to verify this) by Pontefract General Infirmary that everything else was OK with the baby and that we were only here in Leeds for confirmation that all was OK with his heart. Surely there should be some mistake?

We thought aloud and stated that Elliott could have surgery after he was born. A kidney transplant perhaps? However, the Consultant continued to tell us that this condition, called ?bilateral renal agenesis? or, as it also known, ?Potter?s Syndrome?, was fatal. Without kidneys, he could not urinate to create further fluid in the womb, and without fluid, Elliott?s lungs had not developed. He would most probably die because of this secondary condition, called ?pulmonary hypoplasia?. This took several attempts to register with us. Elliott would die. This was too much to deal with. With the rug well and truly pulled from under our feet, David and I were completely numb.

The Consultant was at a complete loss as to how I could have got to 25 weeks and 2 days without being vigilantly monitored, in view of my previous history. We were given various options as to what to do. Either way, Elliott would not live. He was, as they coldly and clinically say, ?incompatible with life?. We were asked what we would want to do. David and I could not digest the diagnosis of our son?s ?condition?, let alone make a decision as to what to do. We said that we would need time to deal with this, and to take it all in. The journey home from Leeds that evening seemed the longest car drive ever.

On Friday January 7 2000, we requested a visit from our vicar (the local Preacher – Peter Holwell) to discuss the heartbreaking situation. We were completely lost as to why God could allow this to happen. Unfortunately for us, Peter couldn?t even answer us on this one. It seemed horrifyingly cruel to be discussing Elliott?s funeral, whilst all the time he was still inside me, listening to voices, kicking, rolling around and having his usual ?silly half-hour?. We chose the hymns ?All Things Bright And Beautiful? and ?The Lord Is My Shepherd? and a reading from Chapter 18 of St Matthew?s Gospel. Peter also made a note of our requests for Elliott?s funeral, such that we did not wish to cast a handful of soil onto his casket at the interment, and that the interment and committal itself was to be a private affair, with only himself and us as Elliott?s parent there at the graveside. It tore me apart, feeling Elliott inside me, yet knowing his life was soon to end…

Elliott’s Arrival:

On Monday January 10 2000, David telephoned the Consultant to inform her that we had arrived at the painful decision to induce our pregnancy; we did not want Elliott to suffer and it was not fair on ourselves to carry on and try to give ourselves ?false hope?. Elliott was going to be an Angel and, somehow in the middle of all this chaos, we had to make decisions and try to deal with the enormity of it all.

The following day, I had to go to Leeds General Infirmary for a pill of mifepristone; a drug to reverse the effects of the pregnancy and prepare my body for birth. I stalled for as long as I could before taking the tablet. I asked the Consultant again and again if she was completely sure of her diagnosis of Elliott?s condition. She even offered to scan me again, just to prove what she was saying was true. I accepted her word, as I did not wish to go through another episode of agony in that ultrasound scanning room. I therefore conceded that I should take the medication. I had to return to the hospital 48 hours later to have my son.

On the evening of January 12, 2000, I saw to my daughter?s usual bathtime routine and got her ready for bed. As the night drew in, I cuddled up to Chlo?on the bed to get her off to sleep; knowing only too well that this would be the last time that the ?three? of us would be together (on this earth, anyway). Chlo?snuggled up close to me and the resonance of her heartbeat against my tummy would make Elliott roll around inside me. I found this very upsetting but, in a very strange way, very comforting too…as if Elliott had already bonded with Chlo?without even meeting her. Later that night, I took a bath and sang Elliott his favourite song, ?Brahm?s Lullaby?. Elliott would love to kick ferociously when I sang this to him; along with splashing my tummy with bathwater, he would go absolutely mad. I savoured this bathtime like no other – even topping up the water when it got cold because I didn?t want to get out. Eventually, there came the time when my skin started to ache because it was so shrivelled with the water, and I had to get out of the bath and get ready for bed. That night, I cried myself to sleep, clinging onto David for dear life.

I arrived at Leeds General Infirmary on the morning of January 13, 2000. Horrifyingly, I could hear the cries of babies as I entered the hospital wing where I would have my son. Not being able to handle this, I cowered into a corner in hysterical tears. I was gently helped to my feet and myself and David were ushered to Rosemary Suite – a homely cluster of two wards at the end of the Delivery Suite, where mums could go and deliver in peace and quiet in such tragic circumstances such as ours. Amidst the entire pine furnishings and chintz interior, it seemed sorrowful that a hospital suite had been specifically created and designed for this purpose. The Midwives managed to calm me down (as I was really wanting to die at that time; I felt so bad) and the first of what would be four doses of misoprostol was administered that morning. All I could do now was wait to meet my son…

David brought Chlo?into the hospital that afternoon to see me. It was a comfort to hold her close and feel some security amidst the fear and devastation that was to follow. Later that day, I started to feel moderately painful contractions starting and, not wanting to frighten Chlo? I asked David to take her home, saying that I would be OK. Although I was absolutely terrified, I thought that if I appeared calm, then it would be less for David to worry about. Amazingly, I was concerned about retaining some sense of ?normality? for Chlo? so that she would not sense that something was wrong with Mummy.

In the early evening, I placed a request for the Chaplain to visit me, which he did. I spoke about my faith and why I had felt abandoned by God. I was angry that God had done this to my child and wanted some answers. Unfortunately, I did not get any – but then again, I didn?t really expect to. I firmly believe that this test from God challenged my faith and belief in Him. I know that he meant Elliott no harm and tried to put myself at ease by thinking that perhaps God had a purpose for Elliott in His eternal garden. Anyway, in my mind, Elliott would definitely be the prettiest flower ever to bloom there!

At around 8.45pm the pains got worse. I telephoned David to tell him that I was still OK and asked him to take care of Chlo?and himself, and that I would see him the next day. At 9.00pm I was using gas and air. The contractions started coming thick and fast. I was petrified and shaking like a leaf. By 9.30pm I was almost climbing the walls with the pain and had some diamorphine. Unfortunately, this had little effect; I admit I felt rather drunk, but could feel the pain all the same.

I persevered with the gas and air and at 1.12am on January 14, 2000, my beautiful son, Elliott David Beaumont slipped quietly into this world, peacefully sleeping in God?s loving hands. I scooped Elliott into my arms and held him. I was completely in awe of this little bundle of love snuggled up in my arms. Inside, my heart was screaming, but strangely, I felt extremely calm. The silence in the room wasn?t eerie at all. I felt a comforting warmness ?wash over me? as I laid back and comforted my son. Elliott looked perfect – his skin was as soft as the ripest peach imaginable and his furry nap of dark brown hair was like the softest velvet ever. I nuzzled into him as I lay with him, savouring his smell to imprint in my mind forever. His smell was delicious; I couldn?t stop kissing and stroking my little boy. He was astonishingly gorgeous – the complete likeness of his sister Chlo? Just like her, he had long ?pianist?s fingers?, as I call them, and long legs that seemed to go on forever. Elliott was 26 weeks and 4 days gestation at birth, 1lbz 15ozs in weight and 14 inches long.

After being weighed and measured, he was bathed and dressed in his white romper suit with blue cardigan and bonnet. I took plenty of photographs of Elliott and laid on the bed with my son beside me, gazing at his perfect features and holding his tiny fingers. During that night, I endlessly paced the room with Elliott safe and snug in my arms, hugging and comforting him and singing his favourite lullaby time and again – ?Brahm?s Lullaby?. I gazed out of the window many times overlooking Leeds City Centre, and watched the stillness of the night – it was so calm, quiet and peaceful – as if to reflect the mood inside my room that night. I never wanted that night to end. If I could have pressed a ?pause? button on life itself, I would have done so there and then. Elliott looked (and I believe was) so much at peace. I felt immensely proud of my son, and I still do.

The following morning, the Chaplain visited as promised and we discussed Elliott?s Blessing. It was important for me to have Elliott accepted into God?s faith before he left us. I wanted God to validate my son, just as much as his Daddy and I did. Again, I held Elliott in my arms and looked out of the window at the view. I sang Elliott his favourite lullaby and took some more photographs of my beautiful baby boy. David arrived with Chlo?and his Mother just before lunchtime. In the company of the Chaplain and his Mummy and Daddy, Elliott was blessed and named and we said our ?farewell? to him. I wrapped him up all nice and cosy in his Moses Basket and kissed his forehead before making the agonising departure from the hospital. David and I had refused permission for a post-mortem to be carried out on Elliott. We did not wish for our little boy to be disturbed and so only gave permission for an MRI scan. This would back-up the ultrasound evidence of his Potter?s Syndrome. The next time we saw him was in his little white casket at the Chapel of Rest.

On arriving home, I slumped on the sofa and then it hit me like a ton of bricks. My arms (and my heart) were empty, MY SON WAS DEAD. I felt like I couldn?t breathe – I went completely to pieces…

It wasn?t until three days after Elliott?s death that my GP and Midwife called to see me. The GP made no mention of Elliott at all. He promptly stood in a forthright manner in my front living room and informed me that ?it would be better if I had a coil fitted!? I did not even attempt to proffer an answer to that one; I just sat on the sofa and looked in utter amazement at David! (I found out much later from the Midwife that he was initially going to suggest that I should be sterilised, but was talked out of saying this to me by the Midwife). Unbelievable attitude isn?t it?!

At around this time, my milk came. I hadn?t really expected it to happen because of Elliott?s early gestation, and didn?t receive any advice on how to cope with this if it happened. The emergency doctor came during the night as I was running a fever and I was prescribed some bromocryptine and some other medication to dry up my milk and to fight the infection. I had developed mastitis and was in a lot of pain. The experience of my milk starting was really mentally hard for me; it felt that my body was betraying me. ?My body didn?t know that my baby had died, did it? My body simply knows that I?ve given birth and therefore I should produce milk to feed my infant.? I thought. All the same, it?s a devastating experience. (It would be a full six weeks before my milk ceased completely).

Two days before Elliott?s funeral, we visited the Chapel of Rest to spend some time with our son. We had already provided some clothes for him to be laid to rest in; a beautiful white velvet romper suit with matching bonnet. The suit had a rabbit logo on the breast pocket, and twinkly silver stars all over it. He looked absolutely stunning in his little outfit. We had also written a letter for him to read in Heaven. We put this into his casket, along with some photographs of his Mummy, Daddy and sister Chlo? We also put in Chlo? favourite yellow Ted Bear, because she wanted ?Eyyott (as she pronounced his name), to have something to play with in Heaven?, a gold crucifix coiled up over his chest, and David?s engagement ring of white Welsh Gold and yellow gold, which I had specially made for him years earlier. (Elliott would have had this ring anyway, so we thought he could take it with him, as a memento from his Daddy). David placed his engagement ring over Elliott?s heart, intertwined with his gold crucifix. My arms ached to hold my son once more, but it wasn?t to be.

Goodbye to Elliott:

Our darling son was a week old today. On the morning of Friday January 21, 2000, the weather seemed to echo our feelings. The cold North wind whistled around; rain stung your face as you walked outdoors. At 9.00am the Funeral Director arrived with our son. He carried our son in his little white casket into our home and gently placed it onto the small oak table in the living room. I wanted Elliott to spend at least a short amount of time in his home before we had to say goodbye. For half an hour, I stroked his tiny hands, kissed his beautiful little face and gazed continuously over his tiny little body. I wanted the world to stop. Right there and then. Oh, to have been able to scoop my son up into my arms and take him up to bed for a cuddle…

The flowers we had ordered for Elliott arrived. We had chosen a 4ft Teddy Bear in the colours of Leeds United – his Daddy?s favourite football team, and a floral platter from his sister Chlo? They were beautiful, absolutely stunning, but I could not concentrate properly on them as my eyes were firmly fixed on my son. Then the Funeral Director came back into the house and told us it was time to go…

Elliott’s funeral was at a Church, which has always been special to me – the Church of St Michael and Our Lady at Wragby, situated in the grounds of the beautiful stately home, Nostell Priory. Apart from worshipping there, I used to go there often to ?sit and think?. Throughout many problems in my life, that Church was my ?thinking place? and it seemed the appropriate place for us to say ?Goodbye? to our son. David was exceedingly brave; he carried Elliott?s casket into the Church and then took his place beside me.

Apart from David?s Mother and a couple of his brothers and their wives, no-one else from our families came. This deeply hurt me, and still does. A couple of very close friends of mine came, though; Janet and Bernard Crapper. I was their next-door neighbour during my early childhood and they have known me all of my life. They have been like surrogate parents to me and I shall always be eternally grateful to them for the love and kindness they have shown me throughout my years.

We sang ?All Things Bright and Beautiful?, followed by ?The Lord Is My Shepherd?. A lovely reading was taken from Chapter 18 of the Gospel of Matthew:

?At that time, the disciples came to Jesus and asked, ?Who is the greatest in the Kingdom of Heaven?? He called a child, whom he had put among them, sand said, ?Truly, I tell you, unless you change and become like children, you will never enter the Kingdom of Heaven. Whoever becomes humble like this child is the greatest in the Kingdom of Heaven. Whoever welcomes one such child in my name welcomes me. If any of you put a stumbling block before one of these little ones who believe in me, it would be better for you if a great millstone were fastened around your neck and you were drowned to the depth of the sea. Woe to the world because of stumbling blocks! Occasions for stumbling are bound to come, but woe to the one by whom the stumbling block comes! If your hand or your foot causes you to stumble, cut if off and throw it away; it is better for you to enter life maimed or lame, than to have two hands or two feet and to be thrown into the eternal fire. And if your eye causes you to stumble, tear it out and throw it away; it is better for you to enter life with one eye than to have two eyes and to be thrown into the hell of fire. Take care that you do not despise one of these little ones, for, I will tell you, in Heaven their angels continually see the face of my Father in Heaven.?

At Elliott?s interment, David and I clung onto each other as his little white casket was lowered into the ground. I couldn?t handle it – this seemed so final. I would not see my son again. As the vicar recited the Committal, I didn?t throw a handful of dirt on my son?s casket. Although this is traditional, along with saying ?ashes to ashes, dust to dust?, I could not (and still cannot) comprehend how people can throw dirt onto the ones they love. David and I requested that this part of the service be omitted and, thankfully, the vicar?s word was his bond.

The Committal service was soon over and David and I were left alone to gaze upon our son?s casket down that deep, dark abyss. I did not want to leave. I couldn?t leave my son alone. My heart was breaking in two. The wind had really strengthened that morning and we were being swayed this way and that with the gusts. My eyes were red, puffy and stinging with my continual crying and the driving rain. David turned to me and said it was time to go. We wanted to get back home to Chlo?and so that?s what we did – turning to look over our shoulder with each and every step that we moved further away from our son. We knew in our hearts that it wasn?t ?Goodbye forever?, just a case of ?See you later?, which I?m most definitely sure it is.

Life After Elliott:

The first few days and weeks after losing Elliott were exceedingly challenging; it was hard enough coping with the grief and devastation over losing Elliott, but to have to deal with other people’s ignorance was just beyond belief sometimes.

Life in our small village carried on. David and I are well-known in our village, having been born and brought up in this confined mining community. However, it didn’t stop us from being alienated…it was the usual thing that you read about in grief support booklets – we were being ignored in the street; people who knew us well would cross over to the other side of the street rather than look us directly in the face, or even talk to us. I even had the ‘pleasure’ of happening upon one of the village gossip-mongers at the bus-stop, who was proceeding to tell someone that I had given birth to a freak, with no heart and no brain!? Little did she know that I was stood directly behind her whilst all this was going on and, not to put too fine a point on it, promptly set the record straight! That episode put an end to the evil rumour-machine prevalent in the village at that time. However, when I got to the security and comfort of my own home, I was emotionally shattered by the experience. At times like this, you find out who your friends and family really are.

I would visit Elliott’s grave on a daily basis, ensuring that he had fresh blooms of flowers on his grave and that they were well watered. It quickly became a daily routine, until the whole thing started to make me feel very depressed and quite ill. At one point, I went through a period of wanting to dig Elliott up; just to hold my son in my arms. It sounds crazy to someone who has never lost a child, but the pain is so raw, you can feel it tearing you apart. At one point, I thought I could hear my son, crying. I really thought I was going mad. I had to get a grip on myself, otherwise I would have ended up being of no use to either myself, my husband or my little daughter, Chlo.

Back home, in the Nursery, the cot seemed emptier than before. Even though I had not had the pleasure of my son using the oak cot, it seemed painfully empty; as if it would never be used again. This wasn’t to say that I wanted another baby straightaway; it was Elliott that I wanted in that cot. Now it would never be that way…

Life, or some sort of resemblance of it, carried on. Instead of coming to my home to see me, the GP would prescribe tranquillisers over the telephone and David, being the dutiful husband, would collect them from the pharmacy. I didn’t dare take them, though. The thought of being out of my brains on drugs did not appeal to me at all, and despite the way I felt, I still had to be there for Chlo. I decided to change my GP as I wasn’t getting the support I needed at all. I wanted help, not drugging up!

Life without the feel of Elliott inside me took a lot of getting used to. After Elliott died, I felt barren; infertile; completely unfeminine. I really felt that my body had failed me, that I had failed Elliott and that I was a useless Mummy. I wondered if I had done something wrong in taking the ibuprofen for my migraine headaches during the early part of my pregnancy with Elliott; was it the egg mayonnaise that I used to have, (apparently, egg can host salmonella bacteria and in pregnant women, it can cause problems with the baby), or perhaps I had caught the listeria infection from the numerous chicken dishes I would eat. I almost became paranoid; trying to analyse the majority of the cooked meals I would have eaten during the early part of Elliott’s pregnancy. I had to stop torturing myself. I was getting nowhere with this cyclic obsession.

I contacted an old school-friend via the mail, to let her know about Elliott. I was hoping that she?d drop by and be able to offer some support. She was a Midwife and based at Pontefract General Infirmary (the hospital which had told me that Elliott’s other organs were OK). No visit, letter or phone call came. I came to the conclusion that she didn’t want to know. I had known her for over 20 years and this was the one time that I really needed her. She chose not to be there for me, so I have to live with that. At least I can stop pretending that there is something to that friendship and put some closure on it now.

A month after Elliott had been laid to rest, David and I felt strong enough to order his Memorial Headstone. We went to a Memorial Stonemason a couple of miles away from where we lived and set about designing a stone for Elliott. After we had decided on what we wanted, i.e. colour of stone/marble, size, pictures, fonts etc., the finished article was shown on the computer screen. I broke down in tears – it was absolutely stunning! I knew that this would be perfect for our little boy. Elliott’s Memorial Headstone would be ready in three months…

May 4, 2000 came. We got a phone call from the Stonemason to tell us that Elliott’s Memorial Headstone was ready and was being erected that day. We said that we would be along to Elliott’s grave later to see the finished item in-situ. Later that afternoon, David, Chlo and myself went to the Cemetery to see Elliott’s stone. Again, I broke down in tears – it is a real shock to the system to see your son’s Headstone there in front of you. It makes it all seem so real and so final. I hugged David and Chlo tightly. At least Elliott’s resting-place was now officially marked and no longer looked like a mound of earth with flowers resting on the top.

For Elliott

We knew you were too special,

To live with us today,

So when God called our little one,

He called you on your way.

They say the sun shines brightly,

On those He loves the best,

We know you’ll light up Heaven above,

As you’re peacefully called to rest.

So, fear not, Elliott, our darling son,

Please don’t feel sad or blue,

Because on your journey to eternal life,

Our love will walk with you.

Words by Elliott’s Mummy

click here to email Lynda

When I first found out that I was pregnant,  I was very happy. It took some time for Steve to get used to it.

When I had my first prenatal visit at 12 weeks, the mid-wife could not find the heartbeat. So, she hooked me up to the ultrasound machine and we saw it. She was concerned why the baby implanted itself high in the uterus. She had me worried about that. I didn’t’ understand what that had to do with anything. Anyway, that visit was horrible. There’s more to it, but  I won’t go into further detail. However, the following visits I was told there was nothing to worry about. My blood pressure was high and they found protein in my urine so they classified me as high risk and I was seen more often. My blood pressure seemed to get better in the second trimester. (I had Pregnancy Induced Hypertension with my first child, but not with my 2nd or 3rd). I did have morning sickness starting around 7 weeks (as I did with my other ones, too), but that went away after a few months. However, with this pregnancy, I had a nagging sharp pain under my left rib, but the doctor said it was my “spleen”, that the baby was pushing on it.  To this day, I do not know if that was it or not.

When I had an ultrasound done at 16 weeks, we were told it was a BOY and Steve was thrilled about it. I was happy, too. Starting at 32 weeks, I got an ultrasound every week and also non-stress tests twice a week since I was high risk  and everything always came out fine.
On October 26, 2001, Friday, I had my 38 week prenatal visit. My blood pressure was high then and they told me bed rest. They were to induce me the following week, but the doctor said I may be induced sooner if my blood pressure continued to be a problem. I was going to go back on Monday. They said my cervix was not ripe or inducible that day (Fri.). I had my ultrasound (measured fluid) and non-stress test and that turned out fine. So, I went home and tried to take it easy, but that’s hard to do with the kids around. On the next day, Saturday, I started having some mild contractions that afternoon. I thought “wow, maybe I’ll actually go into labor all by  myself this time!” (That never happen before because I was induced with my other 3 kids) Well, those contractions stopped. Later that night, I was upset about something. I got up around 3 AM and sat in the recliner chair and watched TV. which was now Sunday.

I started having some very mild contractions again, but then it seemed to stop again.  After a while, I got up to get a shower and I fell down while getting up. After my shower, I sat back down and after a while the contractions started again. It seems like it started getting strong pretty fast. The contractions were not so many minutes apart anymore. It was just a constant pain and I knew I had to get to the hospital. I made a few phone calls to make arrangements for my kids to go to their friends’ house. Then Steve took me to the hospital. I think I got to the hospital around 7 AM, maybe a little sooner.

When I got to the hospital, they hooked me up to the monitor and couldn’t detect a heartbeat, so then they hooked me up to the ultrasound and the doctor looked at it for a while. I saw my dead baby on the ultrasound. He said the reason for death was placenta abruption. I later found out the cord was wrapped around his neck, but that was not the cause of death.  I had to continue on with my labor. I wanted an epidural and they said I could have one, but my blood work came back abnormal, so I could not have one. So, I continued with my labor and delivered Dylan vaginally at 10:37 AM..

He was a beautiful baby weighing 7 lbs. 2 oz.  I held him for a short time, but not too long cause I was feeling weak. Steve held him for quite a while. When he saw his precious face, he was a proud father. This was our first child together and we were both heartbroken. Anyway, I started to hemorrhage a lot and ended up in ICU and needed blood transfusions.  I hated the thought of blood transfusions, but I would not be here today if not for that and also prayers going out for me. After I stabilized, I was put in a room. Steve and I got to spend more time with Dylan. We are so thankful that we got to spend time holding him.

We miss Dylan so much and I have asked WHY so many times. WHY did this happen? According to the doctor, it was a freak thing. He said I had no risk factors. I don’t smoke (although Steve does), I don’t do drugs, ETC. Even though high blood pressure IS a risk factor, he said it wasn’t high enough to cause the abruption. Well, I don’t think I can believe that. How do they know that my blood pressure didn’t get even higher at some point (like maybe when I was sleeping?). I still think my high blood pressure may have been a cause. I also think my fall could have been a cause, although they think I didn’t fall hard enough for that to happen. Nobody knows why it happened, so I need to just accept it. But it’s hard to accept that there are no answers as to why this happened. I have gone over in my mind so many times. IF only…if only they kept me there instead of sending me home on Friday. He was alive 2 days before his stillbirth at my doctor visit. When I had my doctor visit on Friday, little did I know 2 days later Dylan would be dead. I have put the blame on many things and people, including myself. I think about several different possibilities as to why this happened.  But I will never know the reason for sure.

We had a funeral for Dylan and of course that will be a day to always remember. Many people showed up. We had some friends and some people from church and our family there.  Also, a lot of military (Steve’s work) showed up and I did not know most of them.  Even my labor/delivery nurse  came. We were so fortunate and blessed to have so much support from caring people. After the funeral service, we had Dylan transported and we had him buried in central FL near family since we knew we wouldn’t be staying at Eglin AFB for much longer.  I keep his pictures in the living room along with a poem. I know people think I should just get on with my life, but it’s hard and I refuse to let his memory die. And when I see or hear of a baby around Dylan’s age, it upsets me. Many people may judge me for keeping out his pictures, etc. and do not understand why I can’t just put this behind me, but it’s hard for people to understand unless they have gone through it themselves. I think about Dylan each and every day and like to talk about him often. If it were possible, I would gladly take back my swollen feet,  that pain I had under my rib so much, my acid reflux and my fat stomach. I would take all of that back just to have him alive again, and I would love to feel him kick and move again, if that were possible. My life feels like something is missing and I feel so empty. I am thankful for the 3 children I already have, but still someone is missing and that  someone is Dylan. I would love to have another baby, but don’t know if we ever will and even if we do, it will never replace Dylan. I don’t think the pain will ever go away. He will always be part of our family, even though he’s in Heaven now. We love him so much and we will see him again someday, but for now we miss Dylan very much and he will remain in our hearts forever

As I write this addition, it has now been 7 months since we lost Dylan. I continue to think about him each and every single day of my life and my heart still aches to have him here. But I have tried to get on with my life. I still have my moments when I cry, but they are not as often as they were at first. But I still love him and miss him just as much. I know that the pain will never go away and my life will NEVER be the same again since Dylan existed. He is still part of our family and always will be. His pictures are out along with my other children’s pictures and my kids still count him as their brother. Only he is in Heaven instead of here on earth with us.

We are now expecting another baby on Dec. 13, 2002.  To be honest, I am very scared. After I had Dylan, the doctor told me that there is a small chance this could happen again, but most likely it won’t. So, I guess the odds are that I have a good chance this time at having this baby without my previous problem. But there’s still the fear that it COULD happen again, even if the chances are small. You just never know. I am happy that God is giving us another chance to have another baby, but I cannot be really happy yet,  until I give birth to a healthy, normal LIVE baby and get to bring him/her home from the hospital,  because my fear is getting in the way.. Dylan certainly looked normal and healthy, but he was not alive and I still can’t figure out why I carried him for 8 and 1/2 months, only to have him taken away from me. All I can do is hope and pray that this pregnancy will not have any complications this time and that we will have a happy ending for both me and the baby.

Good news and congratulations !!!!  

Ryan Jacob was born Dec. 2, 2002 weighing 7 lb. 2 oz.

We are so blessed to have him!

click here to email Sharon personally

When I found out I was pregnant with triplets, I couldn’t have been happier. I had waited so long to get pregnant, and now I was going to be a mother of three!!! My triplets were born prematurely, at 31 weeks. Three little girls came screaming into the world in October 24, 2001. The first was Devan Rachel, then came Grace Mackenzie, and finally Jordan Hayley. All were small, and their lungs were underdeveloped, but otherwise they were stable. They were put on oxygen, and we prayed every night that our angels would make it.

Two months and three days after their birth, Grace and Devan came home. Jordan, who was still on oxygen, was in the hospital another two weeks. We were so happy to have our little girls home.

Then on January 6, 2002, we took the girls in for a checkup, and the doctors told us something was wrong with Devan’s blood sugar, glucose level, and about a half a dozen other things. She was not a healthy girl. She was put back into an incubator and hooked up to IV’s and oxygen. She looked just as small and helpless as she did right after her birth.

Things finally began to look up for Devan when the doctors discovered that an infection had gotten into her IV. Since it was not detected right away, the infection spread throughout her body, ultimately settling in her lungs. It was too late-there was nothing we could do to save her. Devan died on January 15, 2002, almost a year ago. I would love other parents to contact me.

Emily Jettson

click here to email Emily personally

I was expecting my second baby and things could not have been better. Sara was a little over 4 years and was so happy to have a new baby brother or sister to play with.   I went to have my scan early because we were supposed to go on Holidays for a few weeks and I didn?t want to wait too long. I went by myself and through a long series of tests; we were told our baby had Down syndrome.  Needless to say we postponed our holidays.

I was devastated; I came from a family of overachievers and believed in success in life. My husband was really upset because we had found out the baby was a boy. He overnight stopped picturing his son at his side, playing cricket and imagined a life with a boy who would never fill any of the dreams we had for him.

It sounds really harsh but unfortunately that is what everybody believed, our family, our friends and our son?s own parents.  The pregnancy was not the best, some people asked us why we didn?t terminate and quite frankly we wondered. I guess we felt ?guilty?, were overwhelmed by the news, and had no support.

We had bought the usual baby things but didn?t have the excitement that should have come with it. Our little girl ironically didn?t care. The only thing she asked was whether the baby would play with her and cuddle her.  We should have learnt from her at that stage but we were not ready.

The labour was nice and easy and the moment I heard the baby cry I was a little scared. They put our son in my arm, my husband and I looked at each other stunned; he was beautiful.  He looked like a baby; he had a lovely body, skin and little black hair. The midwife who knew we had difficulties dealing with his diagnosis offered to take him away, and to her astonishment, we refused. There was no way anyone would take my son away from me. He was mine, he was perfect and we would all grow together.  From that moment onward, we ?educated? ourselves, we read, we talked to doctors and we met up with other parents. Our son was doing all the things babies do and he was a source of joy. Our daughter enjoyed helping bathing, feeding and even changing Daniel?s nappies!  When I think about all the ideas we had about our son?s condition and our life to be with him, I can help but realising how wrong we were and how happy we are with our two beautiful children.

Daniel is now four. He loves going to playgroup and is so caring with the other children. He loves clothes; he has a favourite Monster T-Shirt that he wears all the time. He goes into my bathroom and helps himself to my hair mousse to make his hair ?like a kookaburra?.  At night, when he is tired, he will lie in front of the TV with his favourite bear and will watch his favourite video ?Napoleon?.  He is my baby, my special boy.  Sometimes he takes care of me when I am tired or upset, and cuddles all of us.  Daniel loves to play with his daddy, they run around the garden and play fights?Daniel has been nothing but joy and progress. He talks well, his behaviour is loving and his has lots of friends. Of course, the day will come where he will have to attend a special school and some of his abilities may ?slow down? but for us Daniel is nothing less than a perfect child and he has not prevented us from dreaming. Our dreams did change but only for the best, we learnt to be understanding, to have an unconditional regard for other people and to focus on strengths rather than weaknesses.  If today we were told we were expecting a Down syndrome child, we wouldn?t have all the false ideas we had then, and we would start planning the birth of another very special baby and celebrate!

My story begins on July 12, 1998. I think I will remember that day, as well as the final day forever.

My husband is military, and we had spent the weekend doing what we enjoy, traveling with a middle ages re-creation group. Nothing felt any different, nothing felt wrong, but I remember, (and will always remember) one of my friends mentioning that I no longer looked as pregnant. I was 16 weeks along. I only thought it was because of the clothing I was wearing, so I didn’t worry about it at the time.

We returned early on Sunday, because my husband had to go to work. I settled down to relax and watch a movie. (The Little Princess…  something else I will always remember.) There was a little pain, but I assumed it was still growing pains. Then, I noticed the blood. I was so terrified. We are stationed in Germany, which made things a little tough. I tried calling the military clinic, but the line was busy. My doctor is German, in a German clinic/hospital, so I called there next. I was lucky. Someone spoke English. They told me to come in right away. I tried to call my husband but he was “out in the field” and could not be reached. So, I drove myself to the hospital, crying and praying all the way.

When I got there, the doctor on call checked me out. He didn’t/couldn’t tell me anything, but strongly suggested I stay at the hospital. My baby was still alive, there was a heartbeat. I was not yet too worried. I thought since my baby was still alive, that I had reached the hospital in time. (Yes, so na?e. My first baby.) I called a friend who worked with my husband and asked him to contact my husband, but as far as I knew everything was still okay.

The next day, the chief doctor checked us out. He told me that my baby had only a 10% chance of survival because my amniotic fluid was almost gone and there was strong signs of infection in my uterus. I started bawling. The friend who works with my husband showed up as they were wheeling me back to my room. I was
still bawling. I told him I needed my husband now. (He drove 2 hours himself to get him…what a wonderful friend.)

Three weeks later, my baby is still alive, there is no more signs of  infection, so the doctor wants to try a “stitch”  where they sew the ends of my cervix together. They were hoping to keep the  amniotic fluid inside, and save my baby. I had been in the hospital the entire time, on strict bed rest (I could only get up to use the bathroom). I decided to give it a try.

I had never had surgery before, I was scared about my baby, I was so scared about surgery.. It was a terrifying experience. But we survived. Everything was fine, except I was still losing fluid. The doctors started talking about handicaps. Without the fluid, I guess the lungs would not develop and my baby would not have room to move, so the arms and legs would not be right. They suggested “abortion” NO!!!!!!!!! I could not and would not do that. (Neither would my husband.)

One week later, contractions started. They thought it was over. They removed the sutures in my cervix and took me to the labor room. The contractions slowed, so they took me back to my own room. (My wonderful husband was there the entire time.) They allowed me to get up and walk (after four weeks, it was amazing I still knew how!) There was still a heartbeat. My baby was still alive. Still fighting for his tiny little life. We had so many people rooting for us. The nurses and the doctors were all surprised that my baby had fought for so long. Everything except the amniotic fluid looked normal. Everything. I still had high hopes. I was in my 20th week. It was still too early to save my baby, but he was still hanging tight. I didn’t think about the amniotic fluid. I simply thought that technology would be able to develop the lungs if I were able to hold out for a few more weeks.
That was when they told me that even if I went to term, without the amniotic fluid, the lungs would not develop and my baby would die because there would be no exchange of air with the blood. I still didn’t give up hope. Maybe my membranes would heal and the amniotic fluid would build back up.

After a week of no change (still contractions, but irregular, still bleeding, but irregular, and still a good heartbeat), they suggested  a German University an hour away. I was all for it. Universities usually have experimental and the newest technology. I started feeling lucky again.

The ambulance drove me to the University Hospital (everything you have heard about German drivers is correct. We drove 140 mph and there were still people passing us). After sitting for many hours they finally checked me out. They used Doppler and sonograms. My baby’s heartbeat had become irregular. It was slowing to 50 bpm. (Was it the ambulance trip? I’ll never know.. But I like to think it was.) The hospital asked me why I was there. I went in the morning and no one fed me or watered me… No one told me where I could get these things either. My husband blew out a tire so was late arriving. I had to do the same paper work twice, and I was put into a room  with four other pregnant women. I just wanted to go back to my old room, where I knew people, they cared, and took good care of me. The doctors told me my baby was dying, and I did not want my baby to die around these strangers. I told them to send me back.

I arrived back at 8 pm. They found me food and put me back in my old room. They all looked so sad. They had tried so hard. They were some wonderful people. I did not sleep that night. I was  having more contractions and I was so sad. I sent my husband home because if anything happened, he could be right there, but I needed to be alone with my baby one last time. (Is that selfish?)

The next morning, the heartbeat was gone, my baby was gone, I started crying quietly. (My husband was there and he was crying too.) The doctors asked if we wanted to induce labor. (I was still having contractions.) We agreed.

I won’t go into details, but it was the strangest, scariest, longest, saddest hour of my life. Yes, hour. They kept me in my room because the delivery room was in use. They had no idea it would go so quickly. The pain was horrific. My husband wanted to do something, but was powerless.

Then it was over. They brought him to us, our little Christopher Defiance. My husband and I agreed that he was defiant to the end, fought long and hard. Maybe it isn’t a normal name, but it fit. He was beautiful. So tiny. He had all ten fingers and ten toes. We  just sat there and cried.

Our priest came in, after I got out of surgery (D&C). He blessed little Christopher. I was so glad he did that. It helped a little. He said our little angel was in heaven.

I love him and miss him so much.
My little Christopher Defiance Bethea
August 18, 1998

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Brendan’s story

6/03/1989-7/03/1989

Potter’s syndrome

A poem for Brendan

I Am a Child of God
Original text by Naomi Ward Randall, modified by Nichole Brereton

I am a child of God, and He has called me home.
My earthly journey’s through, but still, I do not walk alone.
He leads me, guides me, walks beside me, helps me find the way.
He welcomes me with open arms–I live with Him today.

I am a child of God, and I have gone ahead.
My earthly life was brief, but oh, such peace and love I gave.
You loved me, held me, gave life to me, and though I can’t stay,
You know that I will always be only a thought away.

I am a child of God, and I will wait for you.
Celestial glory shall be ours if you can but endure.
I’ll lead you, guide you, walk beside you, help you find the way.
I’ll welcome you with open arms, one bright celestial day.

My pregnancy with Brendan

On May 31st, 1988, I miscarried at about 8 weeks.  We immediately began trying to get pregnant again.  Around the middle of August, 1988, I was pregnant again with a due date of March 22, 1989.  On November 22 (about 19 weeks) I went in and had an ultrasound.  I don’t know if they weren’t looking for Potter’s syndrome in those days, or if I had an incompetent technician, or if the difference between 19 and 20 weeks is that big, but everything seemed to be fine.

She said that she couldn’t see much because the baby was “rolled into a ball.”  So I went home oblivious to what was really going on, thinking that everything was going great.  I remember that the baby moved regularly, but it was always like he was vibrating or shaking, none of the pokes and jabs of my first baby.  His heartbeat was always strong and steady.

At about 37 weeks I noticed a hard lump right below my belly button.  I thought it was the baby’s bottom, but when I went to my OB that week he said it was the baby’s head.  He suggested I see a specialist for an attempt at a “version” procedure where they turn a breech baby in the womb.  I was a little nervous about it so I got my husband, Mark to go with me.

Brendan’s Birth

We arrived at the hospital for the version at 8 am on March 6, 1989.  I was nervous because I had heard that it might hurt.  Anyway, the specialist, a Dr. Wallace, did an ultrasound.  He just sat there looking and looking and looking and then he said, “I won’t be able to turn the baby because there is no amniotic fluid.”  Then me asked me if I had noticed any leaking and I said no. The doctor then said that there were two possible reasons that there could be no amniotic fluid.  The first was that the placenta was not working correctly.  The second was that the baby had no kidneys.  Then he quite calmly stated that both of these conditions were quite serious and that the baby was likely to die.

He said he was going to call our OB and arrange for a more thorough ultrasound.  Then he left the room.  Mark and I were both very shocked and frightened and we cried a lot during the interminable wait to get the second ultrasound.  Finally we had the second ultrasound done, several doctors came and looked at it and then they went into a little room and conferred.  Then they came out and said that they couldn’t be 100% sure what was going on but they all agreed that it would be for the best to go ahead and take the baby by caesarean section that day.  I was terribly upset.  I was at a strange hospital with a strange doctor.  I called my OB and he said that he felt that I should go ahead and have the baby at Monmouth, because they had all the best newborn intensive care there. The surgery was supposed to start at 1:30 PM, but didn’t actually start until 5:00 PM.  Mark and I were terribly worried and concerned and didn’t know what to think or do.  Finally, at 5:00 they took me to the delivery room and gave me an epidural.  I began shaking uncontrollably.  My husband had gone to scrub so he could be in the room when the baby was born, but the doctor came in and started without him.  I kept saying, “Where is my husband, Where is Mark?”  The nurse went to find him and brought him back.  He was so nervous that his legs were shaking.

The baby was born unbelievably fast.  The doctors said, “It’s a boy,” and I remember feeling very, very happy, especially for Mark because he really wanted to have a boy.  Mark stood up and looked over the drape to have a look at the baby and when he sat down again by me he said, “He looks very gray.”  Later he told me he thought the baby was dead.  I was still optimistic and told Mark that our little daughter Alison had looked pretty gray, too.The nurses had told me that when the baby was born he would be taken into another room and checked over and then they would bring him right back for us to see.

They never brought him back.  I started asking, “Where is my baby?,” and then I asked Mark to go check on him.  Mark, meanwhile, knew that something was wrong.  He said the nurse grabbed the baby in a sheet and rushed out of the room and she had a terrible look on her face.  He said that another nurse ran in and asked the doctors who were still working on me, “What is the case history on this?”  Mark could see into the next room where the people were working on the baby, trying to get him to breathe, and he could hear them calling over the intercom, “Get Rekedal, get Rekedal!”  Mark thought they meant some kind of drug, but actually Dr. Rekedal was the Head of Intensive Care Pediatrics.

Dr. Rekedal ran in and they all worked on the baby and got him stabilized.  Then Dr. Rekedal came over to where Mark was and told him that he needed to do a lot of tests, but he could tell already that the baby had multiple anomalies.  Meanwhile, I didn’t know any of this was happening because I was back in the delivery room becoming more and more hysterical.  Finally they wheeled me into a recovery room where I cried and cried and cried and Mark finally came in and tried to comfort me, but we were both very frightened and upset.

 Our Bishop, Richard Connolly, came in just at that time and just as he did, three pediatricians came into our room to talk to me.  They said that they were very sorry, but that the baby just didn’t have enough lung tissue to make it and they didn’t expect him to live through the night.  They said he also had a narrowed aorta, and many other problems, but that the problem with his lungs was the most serious.  Mark and I were devastated.  It was so unreal.  That morning we had thought everything was fine and now our baby lay in the hospital dying.

 After the doctors left, Mark and Bishop Connolly went down to see our little son and they gave him a name and a blessing–Brendan Mark Tyler. Mark got to see Brendan in the ICU Nursery but I never did.  Mark says it was probably a good thing because it would have broken my heart.  I couldn’t go to where Brendan was unless I was in a wheelchair and when I tried to get in one I passed out and then the nurses said I had better not try as I was to wiped out from the surgery.  Mark said Brendan didn’t move and he didn’t open his eyes, but if Mark would touch his little hands and feet, he would draw them up close.  So he must have been a little bit ticklish like his daddy.  Mark said that when he looked at Brendan he was reminded of the little character on Sesame Street, “teeny little super guy.”  Brendan was our teeny little super guy.

Brendan proved all the doctors wrong as he did live through the night.  The nurse came at 10 AM and got Mark because they knew that Brendan would die soon.  I tried to go with Mark but was still unable to physically get into a wheelchair yet so he had to go alone. While Mark was gone I kept wondering why Heavenly Father would let this happen to us and to Brendan.  I kept remembering a question from one of Mark’s seminary tests I had graded the night before the trip to the hospital.   The question was, “How can we be sure our prayers will be answered the way we want?”  The kids had answered, “Our prayers must be in harmony with the will of God.”  Mark and I and little Alison had been praying for nine months that our baby would be strong and healthy.  But I realized that that had not been Heavenly Father’s will.  Heavenly Father had wanted Brendan to come to Earth just long enough to get a body, and then return to Him.  I decided that what had happened was the will of Heavenly Father, and that meant that everything would be all right.

After about 10 minutes Mark came back to my room.  He was holding little Brendan.  Brendan looked so sweet and peaceful.  His little spirit had left his body but I believe he was still in that room with us to comfort his mommy and daddy and let them know that he was fine.  I got to hold Brendan for the first time and I told him that I loved him very much and that I had wanted very much for him to come and be a part of our earthly family, but that I knew that he would always be a part of our eternal family, so I would let him go back to Heavenly Father.  Mark and I both held and loved and checked out little Brendan for about an hour.  Mark even held him up to the window so he could get a view of outside. Brendan was a very cute little boy.  He was 5 lbs and 11 ozs. and he was 17 inches long.  He was wearing a cute little blue hat and he was all wrapped up in a little ABC Blanket.  The hospital gave us all those things to take home with us, including his little hand and foot prints.  He had blond hair and blue eyes.  He looked a lot like the Tyler side of the family.  He just seemed to be peacefully sleeping like any other baby.

While Brendan was with us Mark regave him a name and a blessing so I could be a part of it.  Our Bishop came by again while we had Brendan with us, and we got calls from my Grandma and Grandpa, my Mom and Dad and my others brothers and sisters.  It was hard to have to tell them that Brendan had passed away, but their love and prayers were with us even 1000 miles away. Finally we let the nurses take Brendan away and then we had to call our friends who were watching our little daughter and tell them that Brendan had died.  They brought Alison down to see us later that day and she came in like a little ray of sunshine peeping through a great fog.  She was running around asking all kinds of questions and being her two year old self.  It was wonderful to see her.

Brendan’s Funeral

Mark and my mom picked out a beautiful little white suit for Brendan to be buried in, and we arranged to have him wrapped up in the little blue bunny quilt I had made for the new baby.  The nice thing about it was that we had made that quilt at my parent’s house at Christmas, and so every one in my family had got to put a few stitches into it.  The day that Brendan was born had been rainy and snowy and it had been rainy ever since, but on the morning of the funeral it dawned bright and clear.  Mark and I both felt that Brendan’s funeral service was the most beautiful we had ever been to.  Both of his Grandpas talked and gave very beautiful talks.  A sweet friend sang two of my favorite Primary songs, “Families Can Be Together Forever,” and “Love One Another.”  At the gravesite Mark dedicated the grave with a beautiful prayer.  After much thought and prayer we designed a beautiful headstone for Brendan.  The inscription reads. “The Crown Without the Conflict.”

Afterwards

We didn’t know that Brendan had died of Potter’s Syndrome until about 3 weeks after his death.  The ICU pediatrician, Dr. Rekedal had us come in and he told us that Brendan had died of Potter’s Syndrome.  He told us that it means that the baby has no kidney’s or kidney function.  It causes many other problems and babies born with this syndrome are unable to live outside the womb.  He said that it was not genetic in our case, but that it does occasionally run in families anyway.  Mark and I were brave enough to go on to have three other beautiful children but I was a nervous wreck each time.  We will never forget our little angel son and look forward to seeing him again, someday.

click here to email Denee

Welcome to the resource section where you will find a list of some good books available to parents and families.

~~~~~~~~~

When Pregnancy Isn’t Perfect : A Layperson’s Guide To Complications In Pregnancy
(Laurie A. Rich)

High Risk Pregnancy and Feotal Diagnosis;your journey

      (Stephanie Azri)

 Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability
(Robert A. Naseef)

 Living in My Skin, An Insider’s View of Life with a Special Needs Child
(Lori Hickman)

The Parent to Parent Handbook, Connecting Families of Children with Special Needs
(Betsy Santelli, Florene Stewart Poyadue and Jane Leora Young)

 In Time and With Love: Caring for the Special Needs Baby
(Marilyn Segal)

 After the Tears: Parents Talk About Raising a Child With a Disability
(Robin Simons)

When a baby dies: the experience of late miscarriage, stillbirth and neonatal death.           (Nancy Kohner) 

 Help, comfort and hope after losing your baby in pregnancy or the first year.   

     (Hannah Lothrop)

Not Compatible with Life: a diary of Keeping Daniel

(Kylie Sheffield, www.trisomyoz.bounce.com.au for a PDF copy of the book)

 Healing together: for couples grieving the death of their baby.                                              

     (Lister & Lovell) 

 A time to decide, A time to heal- for parents making difficult decisions.     

   (Molly Minnick & Mary Ciotti)

 Genetic terminations

(Romeo)  

 Grief therapy for men

(Mundy Linus)

  Precious lives. Painful choices

(Sherokee Ilse)