Severe foetal abnormality: ‘Her short life was a burst of sunshine’

In late June 2013 I was pregnant, excited, insanely happy and attending a routine scan at an Irish maternity hospital. Two days later, the day before the school summer holidays, my entire world was turned upside down. In July 2013, my husband and I terminated our much-wanted pregnancy and said goodbye to our beautiful, utterly adored baby girl, Laoise.

We are sharing our story in the hope that it might help parents who have had a similar experience to feel slightly less isolated. We also wish to highlight how the inadequacy of current legislation can compound the heartache that families in situations such as ours suffer. Additionally, we want to highlight the fact that the issues of severe or fatal foetal abnormality have many grey areas. Recent debate and proposed legislative change had been restricted to the issue of fatal foetal abnormality. There is a separate issue of severe foetal abnormality that remains unspoken but it is equally important. Our story concerns a severe abnormality that, while not necessarily fatal, would have significantly affected our baby’s quality of life.

At our routine scan it became apparent that our baby had serious heart defects. A brain anomaly was also discovered, and it was suspected that she had other health problems. While we were receiving obstetric care in Ireland, my husband, who is French, arranged a consultation for us in a highly regarded maternity and paediatric hospital in France. Following a partial diagnosis in Ireland, we sought a more complete diagnosis there, and in the ensuing weeks it was found that our baby, due to a genetic mutation, had a number of serious abnormalities. These included complex heart defects (she had an underdeveloped left heart, an interrupted aortic arch and other heart anomalies), significant sensory deficits (including deafness, absence of sense of smell and, more than likely, blindness), as well as a significant brain abnormality.

Multiple open-heart surgeries

From the outset, the medical team in France set about providing the best foetal medicine care to our baby, and her wellbeing was undoubtedly their priority. When the extent of her health issues was being diagnosed, confirmed and candidly discussed with consultants from various fields, we gradually found ourselves surreally hoping that they would tell us that she would die peacefully shortly after birth. However, it became clear that an imminent peaceful death was not a certainty and that our baby could survive even with all of the abnormalities she had. Treatment entailing multiple open-heart surgeries, each associated with a risk of death, was discussed with us.

We did not want her to have to endure a prolonged death and we struggled to see how her life could be a happy one if she survived. We felt that it would have been cruel to force her to endure a life that we considered could be worse than death. In addition we knew that the medical intervention that would have been needed to keep her alive would have caused her substantial physical pain over a long period. We were also mindful of the potential risk of neglect that our other children could face if we devoted all of our energies to the care of a very unwell child.

They advised us that a medical interruption of our pregnancy was a choice available to us. They explained that it would be performed by giving her medication, administered via the umbilical cord, to stop her heart from beating. This would be followed by induction of labour and vaginal delivery. They assured us that she would feel no pain. We desperately wanted our baby to live and we desperately wanted to care for her, yet we failed to see how she could have the capacity to experience happiness. We believed that letting her go gently and peacefully was the most loving act we could effect for her.

In France we were entrusted with that choice, and we were the people best-placed to make it, having considered all of the medical information available to us within the context of our family. Living with the reality that we decided Laoise’s fate is difficult, but, while we miss Laoise enormously, we are somewhat at peace with our decision. It is also reassuring that our decision was unanimously supported by the doctors overseeing Laoise’s care.

A wonderful surprise

Our pregnancy had been a wonderful surprise, and the promise of a third child felt like the most wonderful dream come true. Our baby was loved and very much wanted from the moment I was aware of her existence. Now I am very grateful to have such beautiful memories of the intense happiness I enjoyed while carrying Laoise. We never imagined receiving the news that our baby was sick. We could never have imagined such a cruel and severe combination of health issues.

After our baby died we learned that had she been born alive, we would have been strongly advised to consider declining lifesaving surgeries; this would have been the case in Ireland as well as France. We were not aware of that fact before she died, however. Many parents only receive a final diagnosis after their baby is born when the full extent of the issues becomes clearer. In such cases it is not always possible for parents to be assured before birth that they will be offered palliative care. Following a diagnosis of a hypoplastic (underdeveloped) left heart, some parents choose to allow their babies to die after birth, such is the severity of the treatment; the medical profession in Ireland is not reluctant to facilitate this choice.

The anguish and pain caused by losing a baby is profound and indescribable. I don’t feel that the pain would have been less if we had gone through this experience at home. However, the process of obtaining and considering a diagnosis in France, our baby’s death and birth, and our baby’s funeral lasted for more than 2½ weeks. I don’t regret a moment of this time, but being away from our other children for that duration added unnecessary trauma. Over a two-day period before I left Ireland, I had to break the news to my four- and six-year-old that their baby sister was very sick. I had to prepare them for the possibility that she might die, and then, when they most needed our support, I had to leave them with their grandparents without even being able to tell them when I would be home.

We went to an undertaker

My husband travelled home from France to visit our children on a number of occasions. While he was in France we went to an undertaker, arranged Laoise’s funeral and selected her coffin together. Doing so while I could feel her familiar wriggling was almost unbearable. We were also together for Laoise’s death, birth and her cremation. Regrettably, our children never saw her.

My labour began spontaneously and unexpectedly, and I spent the very early stages of it alone in a hotel room in a city where I knew nobody and struggled with the language. My husband was returning to France the following morning. From the moment we presented at the hospital, I was struck by the sensitivity, kindness, and compassion of the midwives. The staff who accompanied us through Laoise’s death and birth made the experience very dignified and serene. Our daughter fell asleep in the comfort of my womb and died peacefully.

In our grief in France, we were supported by sympathetic, understanding staff. On our return to Ireland the maternity staff here gave us tremendous support, which I cannot overemphasise and which we valued enormously.

Stillbirths are rarely talked about, and grieving parents can feel very isolated. In addition, the legal reality in Ireland made us feel as though we should feel ashamed and guilty for what we did. Bizarrely, there also seemed to be a perception that because we chose our baby’s fate, we somehow escaped the aching grief of losing a baby. We grieved for Laoise as much as any other parent who has lost a baby, and her absence leaves as great a void. Our legal situation, cruelly, seems to foster and perpetuate a sense of shame and misunderstanding around the issue of termination for medical reasons.

Our experience was coloured in other ways specifically because our baby died in France rather than Ireland. We registered Laoise on the stillbirth register in France, where she was born. However, as we live in Ireland, and I am Irish, it would have been more meaningful to have had her registered in Ireland. Had she been born in Ireland this would have been possible.

In France, parents are advised, with the best of intentions, not to let their other children see a sibling who has died; it is felt that they may become traumatised. In Ireland, however, a different approach is taken and parents are encouraged to let children see and hold their sibling if the parents and children are comfortable with doing so. To me, belonging to this culture, that would seem to have been a healthier way for us to deal with Laoise’s death. However, in our vulnerability, we took the advice given. My son, justifiably, expresses anger at not having seen his baby sister.

These are all regrets that we shouldn’t have to feel. However, if we had not allowed ourselves to choose, we believe our regrets would be far, far greater.

She had a beauty all her own

Our baby was beautiful. She weighed 5lb. and she had dark chestnut hair: lots of it. Her eyes were the same shape as her big brother’s. Her nose was like her sister’s and she had her sister’s long fingers. Some of the ultrasounds carried out had been so clear that we had felt as if we were looking at her sister as a baby. In a photo we have of her after she was born, she looks just like her brother did in the first baby photo taken of him. She had a beauty that was all her own too. In the womb she had displayed astonishing strength and had seemed more likely to be a footballer than her siblings.

We cherish happy memories of when we were planning for her arrival. Her brother and sister hugged and kissed my tummy constantly, read stories to her and sang to her. We have a box full of precious mementos, alongside medical records and scan images. It holds a never-read copy of Wobble Bear Says Yellow, the first and only book I ever got to buy for her. Every now and then the kids add pretty stones, pictures they draw for her and they compose poems and songs about her. Her short life was a burst of sunshine that touched us immeasurably. We will always love her.

We never imagined having to make such horrendous choices for our own baby. In the same circumstances, other parents might have made very different choices, and we respect that. There is no right or wrong decision. Every parent strives to make what they feel is the best possible decision for their family. No parent should be judged for that.

The identity of the author is known to The Irish Times