Anna and Matthew explore their decision not to follow a surgical path for their baby.
Our “Phoebe Journey” began at the 20 week anomaly scan. The sonographer said she was having difficulties seeing the heart and asked me to take a walk around to get baby to move. I didn’t think twice about it. We’d just been told we were having a girl and I was thinking about how it would have been nice to have a boy (we have twin girls) but, as they always say, “as long as they’re healthy.”
On returning to the scan the sonographer said she was still having difficulties seeing the heart and went to get the doctor. Still, I wasn’t too concerned, it just didn’t occur to me that anything could be wrong. The doctor then had a look and told us almost immediately “your baby has a serious heart condition, it looks like Hypoplastic Left Heart but you’ll need to have a cardiac specialist confirm the diagnosis”. At that point our world came crashing down… surely not, not our baby, not our little girl.
The following day, Christmas Eve, we went to the Brompton Hospital and had the diagnosis confirmed – Hypoplastic Left Heart, but with additional complications, including an ‘intact atrial septum’ (IAS). The three stage operation was discussed, but only briefly and as something that probably wouldn’t be available to us as our baby’s heart was in such a bad state and the expectation was that she would probably live for just a few minutes, possibly hours.
We were given the option of a termination, which we quickly turned down. So we began the process of coming to terms with the fact that I would carry our little girl to term but that she would not survive. We sought to bond with her more as we knew time was short but we also began to grieve and say goodbye. We named her Phoebe Anna. Phoebe meaning ‘bright’ or ‘radiant’ as, whilst we knew we would see great sadness with Phoebe, we also knew that she would always be a shining light to us. Anna is my name and we gave it to Phoebe as her middle name in recognition of the fact that she was part of us, part of me, and we loved and valued her as our daughter.
Our cardiologist from the Brompton encouraged us to get a second opinion at St Thomas’s and, whilst we didn’t particularly feel the need, we thought that would be a good thing to do. So some weeks after the original diagnosis we went to St Thomas’s and, not surprisingly, had the diagnosis of HLH confirmed. However, the cardiologist there, whilst recognising the added complication of IAS, was more optimistic and suggested that the three stage operation was still a possibility.
Great news, so everyone said, there was now hope. But to be honest we primarily felt confused and uncertain. The three stage operation wouldn’t fix Phoebe, she would always only have half a heart. What would her quality of life be like, how long might she live? Would she even survive the first operation…or the second? There were all sorts of secondary, but still valid concerns – how would it impact our marriage and our other daughters Sophie and Kate? And so began the process of making the hardest decision of our lives – to operate or not?
We had many further meetings with cardiologists, the surgeon and various other medical practitioners, all of whom very kindly answered our many questions, as much as they could, and in a very understanding manner.
We watched the DVD and read all the information by Little Hearts Matter, for which we were very grateful. However, so much was unknown. So much was dependent on Phoebe herself, what, if any, damage had already been done to her lungs (which was unknown) and how would her heart and lungs respond to being out of the womb?
For us, unlike the question of a termination, there was no clear-cut answer of whether or not to operate on Phoebe. This is why the decision was so difficult.
After much discussion, thought, tears and prayer we decided not to operate on Phoebe.
Phoebe was born at St Thomas’ Hospital at 38 weeks by Caesarean. She spent just over 24 hours in the NICU being ventilated, on morphine, on a drug to keep a heart valve open and with an intravenous drip giving her nutrients. On the afternoon of the following day all these tubes and needles were taken away. Initially she struggled to breathe, she went blue and we said very emotional goodbyes to her, convinced that this was the end. But eventually, defying expectations, Phoebe began breathing for herself!
Much to our surprise and to the enormous credit of the NICU doctors at St Thomas’s the next day saw us discharged and returning home with Phoebe. We had invaluable support from CHASE Hospice, a charity providing palliative care to terminally ill children.
We had seven precious, wonderful days at home with our beautiful daughter, which will remain in our memories for the rest of our lives. True to Phoebe’s name, the sun shone unseasonably brightly and warmly throughout her life. Other than getting short of breath at times, Phoebe seemed like a healthy baby. We did normal baby things, took her on walks and gave her lots and lots of cuddles. She met family and friends, in person and via Skype video. Phoebe was even baptised at our church on Easter Sunday. On the Tuesday the sun disappeared behind the clouds and Phoebe began slipping away, passing away in the early hours of Wednesday morning.
Not for one moment have we ever regretted continuing with the pregnancy. As for our decision not to operate… perhaps there will always be a small doubt as to what may have been, but primarily we are extremely grateful for the nine treasured days that we had with Phoebe. We miss her, at times with a physical ache, but we also feel at peace about our decision and it is our sure hope that we will one day be reunited with her in heaven.
To anyone facing the diagnosis of Hypoplastic Left Heart we would emphasise that there is no right or wrong decision when considering whether to operate or not. We heard many stories of children who were doing really well following surgery and of others still in a wheelchair at five having spent much of their life in hospital. It is a personal and deeply agonising decision to be made by the parents, considering their context and the information they have about their baby’s condition.
It is our hope for everyone placed in this extremely difficult position, whatever their decision, that they will receive as much care and support from medical professionals, LHM, family and friends as we did and that they will be blessed with at least a little time with their precious baby.