An update, for those following. Please be aware the following blog post references the birth and death of my daughter, via C-Section, and may be distressing reading to some.
We are currently no further along with genetic investigations, and a definitive answer. I know I will not rest until I have definite answers for what caused her condition, and an explanation of the wider implications for my family (specifically, I am still worried about my son and desperately need to rule out any risk to his health).
However, in the meantime, we have received a copy of her postmortem report, as requested, and I have to say it has brought me a certain amount of peace and clarity. Although we still don’t know the cause of her complications, the paperwork has enabled me to better understand her condition itself. I now have a more comprehensive understanding of why she was unable to live; why the pregnancy appeared normal and there was no indication of her illness; and I have even gained some insight into what her “life” might have been like, had it been prolonged.
The night before my C-Section, when it had become obvious that there was a significant problem with the baby, but we were still unaware of the cause, I stayed awake and, in a moment of certain clarity, I re-wrote my birth plan. I had wanted an intervention free home-birth (assuming all was well with the baby), and I already knew that, for her sake, any semblance of that plan was gone. But it seemed important to me to maintain what little control I had, in a situation where control had effectively been taken completely out of my hands. My “revised birth plan” only had two options - one for if she lived, and one if she died. I wrote it on my computer, ready to show to the paediatrician in the morning.
When morning came, we were asked difficult questions. We were asked how far we wanted doctors to take Holly’s treatment, in the event that she was very obviously, seriously unwell. Options were discussed for “comfort care” and we were asked if we wanted to prolong her life “at all costs” (those were not the words used, but it was the gist of what was said). In response, I showed the paediatrician my written birth plan. She read it carefully, and I recall her exact response, “I completely agree.” I still have the words I wrote on my computer, and have copied and pasted them below.
"We want you to do all you can to save our baby. However, in the event that she clearly doesn’t have long to live, please allow us to hold her and avoid any painful interventions. I would prefer her to pass away with dignity, and without pain - in our arms, in preference to someone else’s or an incubator. If her life is going to be short, we would prefer it to be as free as possible from pain and distress.
In the event that the baby is healthier than expected, if there is any way to offer skin to skin at the earliest opportunity, please do your best to allow this. If not, I understand."
Because of this discussion, when Holly was born, the doctors did their best to resuscitate her, but it became obvious within minutes that she was not responding to treatment. The words “comfort care” were used, and we knew instantly, as our beautiful daughter was handed to us and placed into our arms, that it meant she was dying.
Somehow, despite the rapid escalation of events leading up to this moment, I’d had the presence of mind to bring recordings of me singing into the operating theatre. As we held her, we played her recordings of me singing “The Rose,” and “Baby Mine.” She looked comfortable. She looked peaceful. She never opened her eyes, nor did she move her limbs. I saw her lips move, once… It was impossible to know at which moment she left us. But I do know she heard me singing, and I do know that in spite of such awful circumstances, we gave her “a beautiful death.” She was surrounded by love - not only from us, but it was evident in the tears of everyone present in that room. It was tranquil, and sensitive, and when I recall the brief minutes of her life, it is with a sense of peace. Considering that the C-Section was the last thing I wanted, and had in fact been my worst fear, it is the beauty of her death that I remember. She died with dignity.
In the early days following her death, I never doubted that we had done the right thing for her. The sense of peace and even acceptance that she left behind, stayed with me. I was sad for her loss, but I had absolute confidence that we had done the very best for her that we could; we had granted her a beautiful death, and the gift of song.
As time wore on, I lost sight of the beauty of those moments. Without answers about why she died, my certainty that we had done the best thing for her gave way to questions and doubts. I began to wonder if she could have lived, if we should have tried harder to save her, if I could have done something differently at any point in my pregnancy. My faith that her short time on earth was the best it could be for her, gradually eroded. Without answers, I found myself questioning everything, replaying the moments of her life overlooking the fact that her life - and death - were beautiful.
With the postmortem report we received this week, I was able to pore over medical terminology, and research what her condition would have meant for her. Holly was “normal” and perfectly formed in so many ways. Her brain would have functioned as any other baby, and (most comforting of all), I can confirm, having read her postmortem, that her hearing would have been fine; she would have heard me sing (I can’t tell you how grateful I am to be able to draw the conclusion that she would have heard me sing while pregnant, and during her short life). Her condition meant that her muscles didn’t develop properly. Her otherwise normally developing brain was trapped in a body that was incapable of breathing for herself, swallowing for herself, or even moving her limbs. The heart is also a muscle, and hers, tragically, was simply not capable of allowing her to live. In a degenerative, untreatable condition, there is no hope of improvement, only decline.
The more understanding I’ve gained of her physical condition, the more I am able to grasp that my poor, beautiful, and likely intelligent daughter, could never have “lived,” even if we had made different choices at her birth. Even if we had requested every intervention possible, “at all costs,” even if machines had taken over her breathing, she would never have been able to come off life-support. She would never have left NICU. She would never have been able to physically respond to us, even if she was mentally alert - she would have been trapped in her own body, and she would never have improved. God knows, I did not want to lose my daughter, and I wish she had lived… but not like that. I would not have wished to extend her suffering “at all costs,” even if it had meant I got to love her for longer… Even if I had known then what I know now. If I had months to research and prepare for that moment. If I somehow could have predicted the future… I would not have done anything different: it could not have changed the outcome. I am so grateful for that moment of clarity when I wrote those words with absolute certainty that I was doing the right thing for my daughter.
The erosion of that certainty over time has been a hard journey to bear, and I still have moments of questioning and doubt… But I now understand why the paediatrician came to thank me in person after Holly’s death for writing those words (I didn't fully grasp this at the time, though I was touched by her sincerity). It would have made her job easier, knowing that she was acting in accordance with our wishes. She must have known with a greater understanding than we did at the time, that there was no hope for my poor little girl. That extending her life artificially would only prolong the inevitable outcome, but with less dignity, less beauty, and more suffering for all concerned.
It has been a long, hard, journey. And I am still a long way from the “closure” I need from this awful situation. I won’t be able to truly achieve tranquillity and genuine acceptance until I have the answers I need and am able to understand to the best of my ability how and why this happened, and how it might affect the future of my family. However, with a better understanding of Holly’s medical condition, and all of its implications for her, I do at least feel a certain restoration of the clarity of conscience that I experienced in those early days. I like to believe that peace and acceptance was the gift that Holly imparted to me when she left. For a while, that gift has seemed out of reach, but I am beginning to believe that I might, once again, be able to grasp the tangible positives she left me with. That I might ultimately be a better person because she touched my life, so briefly.