I had a CVS which was positive for Down syndrome. When these results came back I didn’t want to believe them and we didn’t know what to do.Weeks ticked by with us both in limbo.
Finally we decided to have an amnio. The worst time was waiting for the amnio results. I did not want to be pregnant. I did not tell anyone about the pregnancy but I was starting to show. I did not want to eat and make the baby grow but I didn’t want to take pain relief or sleeping tablets in case they harmed the baby. I couldn’t sleep. I wanted time to stop until the results were back. The amnio confirmed Down Syndrome so after 19 weeks of pregnancy and 10 weeks of hell we terminated the pregnancy.
Prenatal testing is being offered to more and more women as a matter of routine but the conditions found usually cannot be treated.Therefore couples who find that they have a baby with a chromosomal error, major organ abnormalities or neural tube defect are being asked to make decisions about continuing the pregnancy or aborting.
Most parents undergo prenatal tests in the belief that the results will confirm the health of their baby. Therefore, most parents are unprepared for the consequences of such screening if they are unfortunate enough to have a baby with an abnormality. If an abnormality is found then the parents are faced with Hobson’s choice.
Hobson’s choice
According to the 10th edition of Webster’s Dictionary (Merriam-Webster, 1998), Hobson’s choice is ‘an apparently free choice that offers no real alternative’.
That’s the ‘choice’ some parents feel they have.
The decision to have a mid trimester abortion was the most horrible one I have ever had to make in my life.You are faced with two very lousy choices. You can choose to carry on the pregnancy and make the best life you can for your child knowing that he will be disabled and may not have the quality of life you dreamed of for your child. Or you can choose to terminate the
pregnancy you longed for.You agonise because you wonder what the child would have been like.You wonder if you are making the decision for selfish reasons (either way). Are you choosing to terminate because you are being selfish and do not want the burden of raising a disabled child? Are you choosing to continue for selfish reasons because you so desperately want this child that you don’t care about his quality of life?
BREAKING BAD NEWS
This kind of news is painful and shocking regardless of how it is given or who tells you. (SAFDA, 1995)
Parents who have been in this situation have said:
• It is best to break bad news face to face. Avoid using the telephone in this instance as it can be seen as very cold and impersonal. If the use of the telephone is unavoidable, ensure the parent receiving the news is not alone.
• Gentle and thoughtful breaking of the news is appreciated.
• Ideally a person who is known to the couple should break the news.
• Try to tell both parents together. If this is not possible ensure the parent who receives the news has a support person present. This may be a member of the family, close friend, hospital social worker or chaplain.
• Explain what has gone wrong in terms that the couple can understand.
Avoid medical terminology. One mother says her doctor said ‘Your product of conception has a condition that is incompatible with survivability’. Her response was ‘What? You mean my baby will die?’
Information and support after bad news is broken
‘Your baby has anencephaly.’ In just those few words, all our hopes and dreams for our longed-for child had gone up in smoke.
Be aware that parents who have received bad news may be in shock.They may suffer physical reactions — feel faint, suffer palpitations, feel nauseous, even vomit. Midwifery measures or medication may need to be considered.Above all
Offer the options over and over both in writing and verbally. Give the parents privacy.Allow them time with you, time together, time for each to think separately if they wish.
Offer to help them seek a second opinion — parents can doubt what is being said, especially as antenatal testing can be inaccurate. (Julian Reynier et al., 1994; Clayton-Smith et al., 1990; Griffiths et al., 1996)
Make appointments with health/helping professionals or support groups to help the parents in their decision making. Encourage them to write down any questions they have.These might cover the following topics (SAFDA, 1995):
• the likely range of ability and disability associated with the disorder
• the likely quality of life for the baby and family
• any expected breakthroughs in treatment for the disorder
• implications for future pregnancies
• any maternal risks associated with the abnormality found in the baby
• all the options, support, alternatives and choices available.
Tell the couple when results of any further tests will be available and explain any likely reasons for delay.
Think about your language. Malformed or not the baby is still the parents’
longed-for child. There is a difference between saying ‘you have a spina bifida baby’ and ‘your baby has spina bifida.’
It is also important to explain that the baby will probably be perfectly formed apart from the defect/s. It is especially important to explain that a hydrocephalic baby may not have a monstrously big head, as parents of such babies may believe there has been some mistake if an apparently normal baby is born after a genetic termination.
One mother said:
Everybody had told me that I couldn’t have done anything to cause the problems. I believed their hearts were in the right place and they didn’t want me to suffer from guilt, but I didn’t believe them. How could these people know? They didn’t know what I had done from day to day throughout my pregnancy, only I did. Hearing that I couldn’t have prevented the problems no matter what I did seemed valid since it would encompass everything I did during my pregnancy. (Grady and O’Leary, 1993)
Explanations can also be offered about what it is that the parents are really being offered. Provide written information, either about the condition the
baby has or where the parents can obtain more information. Encourage the parents to get in touch with other parents who have children with the particular disability.
Prepare the parents for how they are likely to feel towards the pregnancy;
feelings of alienation and repulsion are common and may be frightening, as one mother explained:
I didn’t want to touch my stomach for days. I felt alienated, even a little repulsed, by the movements of that baby that had filled me with such joy the day before I heard the news. It was a terrible time.
Be aware that whatever else you can do for this family, you do not make the decision about what happens next for them. They and only they must make the decision and then they must live with their decision with your care and support.
Waters and Richardson (1998) suggest that the parents’ decision will be influenced by some or many of the following factors:
• belief systems
• treatment for the disorder
• previous life events
• family resources, e.g. finances and physical support available
• family dynamics, such as impact on other children of the family, the partner and their relationship.
The authors further state that there are many external pressures including:
• pressure to make a decision based on often groundless time constraints
• pressure to make a decision before 20 weeks’ gestation, without allowing the parents enough time to make the decision that is right for them
• pressure to make a decision quickly, based on an opinion that this is ‘best’
for the parents or even ‘best for all concerned’
• pressure which causes the partner to fear for the woman’s life if the pregnancy continues, where no medical risk is evident.
• the pressure of being pressured to make a decision.