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Between a Rock and a Hard Place              

Deciding About a Pregnancy After a Prenatal Diagnosis of Fetal Anomaly

“This was our baby that we had waited a long time for and the decision was not made lightly. We had to think of our life too and that of our families. What would happen after we died? Nobody could love our child like we could. We had to let go, try to be unselfish. Perhaps many would say that this decision was not right, but we made it for what we considered the right reasons.”
— “Jill” 2007

 

Since Antenatal Results and Choices (ARC) was founded in the UK in 1988, we have had contact with thousands of women like “Jill.” In our lifetime, we have seen a rapid development in and implementation of genetic testing technologies. What has definitely not changed is the emotional impact on a parent who is told their baby has a fatal, life-limiting or disabling condition. After receiving the news that their baby is not developing as expected, parents then face the difficult decision about continuing or ending the pregnancy. I use the words “parent” and “baby” because this is the way women like Jill who come to us most often refer to themselves and the fetus.

I have spent 10 years with ARC speaking almost daily to women and their partners before and after their decision to end a pregnancy upon receiving a prenatal diagnosis. This includes many for whom the unexpected news comes late in the pregnancy. It is undoubtedly a traumatic life event and the psychological repercussions can be significant. But my experience has reinforced my belief that in the face of a fetal anomaly, parents must be empowered to make the decision that is right for them-selves and their families. The vast majority of parents ARC supports regret that they found themselves in such distressing circumstances, but do not regret that they had the choice to end the pregnancy.

Rather than offer a polemic on the ethical justification for abortion in cases of fetal anomaly, I want to use our experience at ARC to let women who have had such abortions provide insight.

The Political Context Surrounding Abortion for Fetal Anomaly in the UK

“I even envied women who had miscarried— something I’d experienced myself, with great sadness, three years previously. But at least those babies hadn’t died at their mother’s hands, and their experiences evoked straight-forward sympathy, never vitriol.”
— “Sara” 2011

 

It is worth pausing to consider the political context in which women now make decisions after prenatal diagnosis. In recent years we have seen laudable gains made by the disability rights movement. There have been legislative changes to combat discrimination against those living with disabilities dis-abilities and inroads made in constructing a more inclusive and accepting society. At the same time, antichoice campaigners have seized the opportunity to attack the clause in the UK Abortion Act of 1967 that allows for abortion if “there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped” and called it “eugenic.” Antichoice advocates have attempted to enlist disability campaigners to their cause. The Society for the Protection of the Unborn Child (a small but vociferous UK antichoice organization) uses its website to accuse ARC of being “actively complicit in the fatal discrimination of disabled people enabled by legal abortion.”

It is a clever move by the antichoice lobby, as they are aware that many who would class themselves as “prochoice” worry that ending a pregnancy on the grounds of disability may devalue the lives of those living with some sort of impairment. Furthermore, when antichoicers decry that those women who have terminations for fetal anomaly are pursuing perfection or taking the “easy way out,” they know that it is rare for a woman who made this choice to speak out publicly against such vilification. In such a deeply private and personal experience, most women understandably do not want their circumstances put under public scrutiny.

The antichoice movement also readily exploits public squeamishness about late abortions in the hope of restricting access. There are regular media flurries around late abortions, in particular those performed past the legal limit of 24 weeks for non-medical abortions in the UK. The fact is that these post-24 week abortions are few in number (according to government statistics there are fewer than 200 post-24 week abortions per annum in England and Wales—0.1 percent of the total) and the majority are carried out due to indications of serious fetal abnormalities that do not manifest until late in the pregnancy.

This charged context can add an extra layer of difficulty for women and couples dealing with a diagnosis of fetal anomaly. They struggle with complex and often conflicted feelings over ending the pregnancy while being fearful of the judgment of those around them and in the wider world. I hope that by exploring the perspective of parents who come to ARC, it will be clear that they are not denigrating those living with a disability, but making responsible decisions informed by their individual values and personal circumstances.

Why Women Need Access to Abortion Beyond 20 Weeks Of Pregnancy

Most developed countries now offer prenatal screening and diagnosis for major chromosomal disorders before the first 14 weeks of pregnancy. This has been facilitated by improvements in scanning technologies and testing techniques that now deliver an accurate early screening result. This in turn enables women to opt for chorionic villus sampling (CVS), an invasive diagnostic procedure that can be carried out from 11 weeks in order to check for chromosomal conditions such as Down syndrome. Early scans now produce images that are instantly recog-nizable as a developing baby, even to the untrained eye. Today most prenatal diagnoses of Down syndrome in England are made earlier in pregnancy as a result of these technological breakthroughs. But it is important to understand that there is a limit to the diagnoses available at this stage of fetal development.

Having been reassured by first trimester screening, many parents approach their mid-pregnancy anomaly scan (usually performed at around 20 weeks) as an opportunity to “see” their baby, perhaps learn the sex and gain further reassurance that all is progressing as expected. While they may be aware that anomalies could be detected, this will not normally be at the forefront of their thinking. Some will invite other children and family members to be present in the scan room to share the excitement.

“So on the Friday morning we went to the hospital for the anomaly scan, and my expectation of that was to be told that everything was fine, and find out the sex of my baby. And that was, that was all I thought was going to happen, because there couldn’t have been anything wrong because everything so far had told me that everything was okay. And even though I read the leaflet that said, you know, this condition and that condition and—none of it really sunk in.”
— “Val” 2011


When parents receive the news that all is not well, they feel as though their expectations are shattered.

“‘Everything is all right isn’t it?’ I said in my innocence. It was then that he stopped the machine; put his hand on my arm and stony faced said, ‘No, I’m afraid it’s not. I think we need to have a chat.’ “That moment and those words will remain with me until the day I die—my blood actually ran cold.”
— “Jo” 2010


Within seconds, all their hopes and dreams around the baby that they had envisaged are destroyed and many then confront the prospect of possibly ending their pregnancy.

“The 20-week scan brought the shocking diagnosis. We only spoke to the sonographer who faxed a referral to a fetal medicine department. I then had to wait from Thursday until the Tuesday to speak to someone. It was the worst few days of my life not knowing what was going to happen—all I knew was that it was spina bifida and malformed brain. That 20-week scan has changed my life forever.”
— “Amanda” 2010


After the initial information, there are usually further specialist scans and tests to confirm the diagnosis. Some parents will be encouraged to wait to see how the condition develops. All this can mean that they can find themselves close to, or occasionally beyond, 24 weeks before being able to make a final decision to have a termination.

There are some structural conditions, particularly those affecting the fetal brain, which do not become apparent until the third trimester. Thankfully, these conditions are rare and can be picked up by chance when a scan has been scheduled for other reasons, such as checking placental position. Again, there will be the need for further testing and sometimes careful monitoring to give as much prognostic information as possible. Sadly, while medical technology has made great advances, clinicians’ ability to give accurate or conclusive information about the expected outcome is still limited, particularly early in the pregnancy. Thus, parents have to make what they know are life-changing decisions based on an emerging, but still incomplete, picture of the fetus.

Deciding to End the Pregnancy

“But how, as … a human being you make those sorts of decisions, you know, ‘Do I stick a needle in my baby’s heart and kill him now? Do I give birth to him and then sort of hope that he doesn’t die, have a heart attack and drop dead at the age of five, you know? Or, if he survives it all, which is the best you hope for, how will he live with the burden of this knowledge of this terrible incurable thing.… ?’ “And I remember sort of going round in circles in my head between these things, and thinking, what am I going to choose, you know? Which of these three just awful, very different scenarios is the one that I feel I could live with, or that I could choose him to have to live with?”
— “Melanie” 2008


“Melanie” powerfully expresses the intense distress often inherent in the decision-making process. It can feel like an impossible dilemma and many will try, like Melanie, to work out what the least worst option is for them. We will never have definitive information on exactly how women make these decisions, but over the years at ARC we have gained knowledge of the factors that parents weigh in the process.

“There was no way I could go through the pregnancy and give birth only to hold my baby and watch it pass away. We also had to think of our daughter, the effect on her. She already knew there was a baby in Mummy’s tummy and loved putting her hand on the ‘little bump’ and talking to the baby. It would have been awful to go through the whole experience and then have to explain to her that the baby wasn’t coming home.”
— “Chrissie” 2011


When the diagnosis is a lethal or life- limiting condition, for some women a termination hastens the inevitable and prevents more suffering for themselves, their baby and other family members. When the condition is disabling rather than life threatening, parents consider how this will affect their child’s quality of life, the long-term impact on their relationship, on their own individual lives and that of their families.

“I tried to shake away the image I conjured in my head of a little boy, lonely and friendless, robbed of the most basic human functions. The prospect of watching a child I’d love just as much as his sisters suffer in this way made me howl. I hugged my stomach, as if I could in some way shield him from the misery that lay ahead.”
— “Sara” 2011


“We had our other children to think of and who would look after our child when we were no longer here. Also we are not very well off financially.”
— “Petra” 2009


“Petra” was concerned about the financial implications of bringing up a child with disabilities. It may feel uncomfortable to consider economic factors but there is no denying the reality that a child with a significant disability will need extra care, frequently requiring one or both parents to reduce their working hours. In these times of fiscal austerity in the UK, social care cutbacks have resulted in reduced access to services for those who cannot afford to pay for them.

There are other considerations for some women and couples, such as the attitudes of close family and friends along with their own values and beliefs around abortion, sometimes informed by their faith. I have lost count of the number of women who have told me that they had always been antiabortion but suddenly found their position first challenged, and then ultimately shifting. Those people of faith who choose to terminate can reconcile their decision with their religion. They often conceive of a benign God who has given them the opportunity to prevent their child’s suffering. They take comfort from imagining the baby at peace in heaven.

Some parents will make a decision quite quickly; others will struggle and vacillate before ultimately deciding to terminate the pregnancy. None will end a wanted pregnancy easily; all know that the consequences of their decision will stay with them. But those who do so have said that for them the consequences will ultimately be less onerous than watching their child die or suffer after birth.

The women whose words appear here articulate the often painful nature of the decision to end a pregnancy due to fetal anomaly. For many there will always be a part of them that rails against being involved in their wanted unborn baby’s death. As we support women and their partners in the aftermath of the procedure, we see them contemplate the extraordinarily demanding circumstances that were thrown at them. We see them make peace with having made a decision that was emotionally painful, but right in their own individual context. We see them integrate the experience into their lives and move forward. It is particularly moving to hear from women from Northern Ireland and the Republic of Ireland who have had to travel to England to have a termination because it is not legal at home. Some of them want to express their gratitude to us for having helped them access services and offered support so they could prevent the birth of a child with severe disabilities or who would not survive.

“The lady that scanned me first of all was very thorough. And if it hadn’t have been for her, we would have never ever have known. And I would like to thank her and I can’t remember her name but I would like to thank her very much, because if she hadn’t pointed these things out in the first place, we’d have never have got to the specialist hospital. We’d never have had the amniocentesis, and we would have never have known until the day he was born.”
— “Debra” 2010


The legal situation in Britain regarding abortion is not perfect, but on the whole, when a significant fetal anomaly is diag-nosed, women are given the option of abortion. We have heard testimony from enough women at ARC to tell us that this is as it should be and we will do our utmost to ensure that this is how it stays.

The quotes in the article are all from ARC members and are taken from ARC News, our quarterly newsletter, with two exceptions. The story from “Sara” appeared in the Daily Mail on May 15, 2010. The quote from “Melanie” comes from HealthTalk Online.org’s web page “Making the decision to end the pregnancy.”