Making a Decision
When trisomy 13 or 18 is diagnosed during pregnancy, full information about the condition may not be available immediately. Parents are given the choice of continuing or terminating the pregnancy.
When only one of the babies in a twin or multiple pregnancy has abnormal chromosomes, the parents may be given the option of ending the pregnancy of the affected baby, although the family will be warned there is a risk that the baby with normal chromosomes may be miscarried as a result.
DON’T LET YOURSELF BE PRESSURED INTO MAKING A QUICK DECISION
It is sensible to talk to and listen to your doctors, genetic nurse, family and friends, and if appropriate your minister or anybody who cares about you or can provide information, but the option you choose must be one you can live with.
In many cases a week or two is not going to alter the situation radically. You are in shock, and your emotions will roller coaster from hope to despair. Give yourself time to accept what has happened, and time to realise this baby is not the baby you planned before you even think about making a decision.
‘We were mourning the loss of our imagined perfect baby and bereavement is never a good time to make decisions.’
‘The specialist explained trisomy 18 in detail, and he strongly recommended having a termination and offered to take cord blood to confirm the diagnosis. We had not thought about having a seriously handicapped baby so this came as rather a shock. It was not difficult for us to carry on with the pregnancy as we don’t believe in terminations.’
‘I have never felt so completely alone. All I wanted to do was wake up from this horrible dream. Through floods of tears my sister comforted me. I then had to give permission for some of the baby’s blood to be taken from the cord and also blood from me. I don’t remember much about this as I felt so totally numb. I was then told I had the choice to continue the pregnancy or terminate. To say I was devastated would be an understatement. I so desperately wanted this child. After an awful meeting it was decided I would return to the hospital for a termination as soon as possible.’
‘After the scan we were warned that one of the babies appeared to have problems, but we were still shocked when the test results showed one twin had trisomy 13. It was explained the affected twin could be given an injection to terminate that part of the pregnancy but we rejected this in case we lost the other twin’.
Prepare a list of every question you want to ask. Don’t feel intimidated by your doctors or the medical terms they use. Ask them to explain everything you do not understand. Write down important points as you may not remember them when you get home. Not every question will have an answer!
‘The scans pointed towards a chromosomal abnormality so amniocentesis was arranged. During the 10 days we waited we kept thinking what we would do if the chromosomes were abnormal. How much physical or mental handicap could we accept? What right did we have to make this decision? Could we terminate a baby we loved?’
‘They asked me to get my husband, we sat together and listened to what she had to say. This lady was so clinical and explained that this and that was wrong. Then she dropped the bombshell and recommended we terminate the pregnancy. I simply couldn’t believe it, my husband and I were very shocked and we left in quite a distraught manner. We went home and wept. We were offered no choice really on whether to continue the pregnancy or not. The hospital doctor told us bluntly that the baby may not survive birth, or may live for a very short time. So really we felt as though we had no choice.’
SEARCH FOR INFORMATION
Talk to your obstetrician, paediatrician and geneticist. Libraries are valuable search tools, but beware of information that is out of date. Written information about the medical problems associated with trisomy 13 and 18, and information on caring for a baby with one of these conditions can be obtained from SOFT UK. The Internet is a useful source of reference, and SOFT UK also has many contacts world wide for related disorders that are exceptionally rare.
‘My consultant rang me at work and told me my baby had trisomy 13, Patau’s syndrome. I had never heard of it before and he said it was like Down’s syndrome. I wish you were given more information on trisomy babies. We had to find out for ourselves. The staff at the hospital were kind, sympathetic and supportive but did not tell us about SOFT UK.’
DON’T BLAME YOURSELF
A bereavement occurs immediately you are told the results of tests, and the guilt and grief can be overwhelming. Terminating a pregnancy raises questions of morality and ethics, and this can make it difficult for parents to discuss this option with their family and friends. SOFT UK can provide contact with families who have been through a similar situation and this can lessen the isolation.
‘I felt devastated. What had I done to cause this to happen? I asked and was told that it was just something that happened in a few cases.’
‘I want to thank SOFT UK for all your help and information at the time of decision making. We were particularly grateful for the chance to talk to other families who had faced a prenatal diagnosis.’
BE HONEST WITH YOURSELF AND YOUR PARTNER
Parents who are married or in a stable relationship need to be honest with each other and not shift the responsibility for the decision on to others; For example, ‘... you wouldn’t be able to cope ... the doctor thinks we should ... my mother would be too upset etc.
‘We spent all of the next day talking. We did not know what to do. All we knew was that we both wanted to do what was best for the baby. No matter how we felt, her welfare had to come first.’
‘I was given two days to discuss things with my husband before seeing the consultant again. I decided to have the amniocentesis now that this big doubt had been put in my mind, but how could I continue with the pregnancy knowing my baby would die? I rang a lady from my church who was a Life counsellor just to hear the opposite view concerning terminations. My husband said he would support me whatever decision I made, although I knew he probably would have preferred to opt for a termination and get on with our lives. While trying to make the decision I could feel the baby moving around inside me.’
IF YOU AND YOUR PARTNER STILL DISAGREE?
If a couple cannot agree on what to do, counselling may help them to explore their own and their partner’s fears in a sensitive way.
Ultimately the wishes of the mother must be respected and supported by those close to her since it is she who will bear the baby when the pregnancy is terminated or the child is born naturally.