In this chapter, we will consider questions that most families have when finding out that their child has a condition, as well as different options for the pregnancy. There are no right or wrong answers, just feelings that other parents have shared. It is important that parents know they have the right to ask any questions they may have, as well as have them answered.

Many parents have explained that they needed to explore all their options and physically imagine each outcome in order to be able to decide whether it was a plausible choice for them. For instance, parents might list options and their ‘pros and cons’ in terms of personal choices and capabilities. Before choosing anything, try to imagine this choice in the short term as well as in the long term. If the choice feels right (as right as it ever would when talking about foetal diagnosis) both in the short and long term, you are more likely to be content with your decision.

How will the pregnancy be affected?

In many instances, the pregnancy is looked at differently from other pregnancies, although generally little or nothing is wrong with it as such. In some cases, the mother can carry on like any other mother with only monthly check-ups. The child, on the other hand, depending on the condition, may need scans and other tests to determine the next course of action.

From an emotional point of view, the pregnancy will most likely be challenging. Indeed, stress and other factors will very likely make the mother very tired, upset and ultra-sensitive.

How will the baby be affected?

This is certainly an essential question. Different diagnoses have different outcomes and parents have different levels in terms of what they can handle physically and emotionally. This question is especially important for parents expecting children who will live with ongoing symptoms.

Will my baby look different?

This is a question that may really worry and even haunt some parents. They may imagine the worst possible scenario that will traumatise them and their other children for life. You have the right to be prepared for differences and to expect medical staff to discuss them with the utmost respect.

Will my baby suffer?

Ethically, this is an extremely difficult question to answer on someone else’s behalf, especially babies who cannot express themselves verbally, although pain relief will always be available at birth if your baby seems uncomfortable. Most often, however, each condition comes with different concerns and the medical staff should be able to meet your child’s needs. For many conditions, the concern is essentially that the baby does not suffer but, once again, your specialist should be able to tell anything that you wish to know.

How likely is the next child to have the same condition?

Some conditions are genetic; others appear early in the pregnancy, as what I call ‘random development’.

In both instances, parents have the right to be referred to a genetic counsellor, who will explain the condition and the likeliness of its recurrence in subsequent pregnancies. In the case of an autosomal recessive genetic condition, the recurrence is often a one in four chance with each pregnancy.

What are my options?

The laws regarding termination vary from state to state and from country to country. In states and countries where termination is generally illegal, hospital boards or committees decide on a case-by-case basis whether it is an option that they can offer the mother. For fatal conditions and in many places, there are usually few difficulties in obtaining a termination. The gestation of 20 weeks is considered a cut-off point because babies under 20 weeks do not need to be registered. Once again, this cut-off point varies from state to state and country to country.

• Mothers have the choice of inducing labour before the baby would be legally viable. Babies usually die during labour, as they are too young and too fragile to survive the labour.
• They have the choice of terminating the pregnancy by injecting a drug into the bloodstream, which will stop the child’s heart, and the mother then proceeds to a vaginal delivery by induction. This technique is used if a decision is made close to 24 weeks of gestation when the baby might be born alive. If unable to access a termination publicly, the parents may be referred or ask to be referred to a private clinic or to another hospital or state. Similarly, if you do not want a termination but feel unsupported you can ask to see another doctor or hospital.
• Mothers can decide to continue the pregnancy for as long as possible and have their child naturally. If born after 20 or 24 weeks, depending on your country, the baby is given a birth certificate and would receive a death certificate and treatment (if possible) is given. Even if your baby is less than 24 weeks old, you can choose to have a funeral and name your baby. This is very much a matter of personal choice.
• Where the child does not have a fatal condition and will live, some parents may feel inadequate caring for him or her and, while they may have refused an abortion, they may not be certain of keeping the baby either. Adoption, respite care, foster care, sharing family care or placing the child within a special boarding school may be options for some families and are worth considering before any assumptions are made as to what can be offered.

Doctors, case managers and counsellors may be able to help you to explore what is the best option for you. Once again, there is no right or wrong answer. It is about living with a choice that suits you as parents. I would like to stress that whichever solution you decide on, there is always likely to be someone who will criticise you for the choices you have made. This is usually someone who has never come close to a making a similar choice and it is important to be gentle on yourselves. In every case, you have the right to a second opinion or a referral to another doctor. If no doctor in your area is willing to carry out your choice, the doctor you see still has a duty of care to explore options for you. This applies whether you wish to terminate or continue your pregnancy.