Wednesday 22 May 2019

Poor Little Thing

My partner and I stood beside our beautiful newborn, in her crib. I couldn't take my eyes off her perfect little face. She was wrapped in snuggly white blankets, and a sweet knitted white hat. She was the image of her big brother as a newborn, causing such a conflict of nostalgia, pride, love, joy, and heartbreaking loss, all at the same time. She never opened her eyes.

"Poor little thing," her Daddy sighed under his breath.
"Don't say that," I responded instantly. It was a fierce, instantaneous gut-reaction. "Don't call her, 'poor little thing.'"
I rejected those words, I didn't even want to hear them. I could not bear to think of her as a "poor little thing." I did not want to face the thought she may have suffered. I didn't want to believe her life was wasted. I wanted to believe instead that her short life was blessed; that she had only ever known love. I bestowed upon her the love and light that I felt looking at that sweet little face. I transferred it to her, to keep forever, and chose to believe she knew nothing of pain or loss. I wanted the heartbreak to be mine, all mine. Not hers. She had been spared. She was no "poor little thing." Pity me, not her. Her life was perfection; mine was irreparably broken.

That was seventeen months ago to the day, as I write this. Yesterday, we finally found out the truth about why she died.

It's hard to explain why it matters. Logic dictates that the reasons cannot alter the outcome. Whatever the cause, the result is still the same. She did not live, and that simple truth cannot be undone. But for seventeen months, I have lived with "what ifs." I have had to face the guilt of wondering if we should have tried harder to save her. The guilt of wondering if something I did caused her death. The unanswerable question of whether I could or should have done anything to save her. Whether something could have been different. I have lived with the background fear that maybe my son could be taken from me too, despite all assurances to the contrary. If whatever killed her was inherited through her genes, could he somehow be affected too? Statistics say no. But statistics offer very little comfort, when you have found yourself on the wrong side of probability.

We now know, seventeen months after her death, that Holly had a congenital myopathy. This means her muscles never formed or developed properly. It was genetic - meaning it was part of her makeup from conception, but it was not inherited. She had a de novo gene mutation, which means it occurred spontaneously as a new error in her genes; neither my partner nor I carry the defective gene, which effectively rules out any risk to my son, and for that I am eternally thankful.

Improbably, it turns out that her particular form of congenital myopathy is unique to her, and only her. The genetic mutation that caused it has never before been recorded. There are 7.7 billion people in the world, and my daughter died from a condition caused by a previously undiscovered genetic mutation. What are the chances? (In answer to that rhetorical question: virtually zero).

Although her condition cannot really be classified, we do know that the faulty gene causing it is usually responsible for causing "nemaline myopathy." So this is where I've had to look for comfort, since it is the closest I'll ever be able to come to a comparison. Babies born with the severest form of nemaline myopathy, which shared many of the same symptoms, often do not live. Holly's condition was similar to the severest form of nemaline myopathy, but in her case, even more severe because her heart was also affected. She was unable to breathe, swallow, or even move. There is no cure, or course of treatment that could have caused improvement. She was perfect in so many ways, but for the sake of one random abnormal gene, she was never destined to live.

That, I suppose, is the answer I have waited seventeen months to hear. All the while putting my grief on hold, unable to process her death without knowing what caused it. I honestly thought that if only I were able to close this chapter, and stop asking myself "what if?" that I might be able to re-create the peace I felt at the time of her birth - when I trusted my instincts and honestly believed that, no matter how sad I might feel, we had done the right thing for her.

So, it's a disappointment to discover (although it should come as no surprise) that I don't really feel any different today to the way I felt yesterday. The weight I thought would lift, hasn't. My reality is still exactly the same, and she is still gone. If anything, those around me have inevitably moved on and I am expected to do the same. But I am now processing a new sadness I never properly allowed myself to feel before. Having achieved the certainty I thought I needed, it has provided some closure, yes. I no longer have to face my "what ifs," I can lay them to rest. Intellectually, I know we did the right thing for her. I think I knew all along, in my heart.

But now I have to come to terms with another unexpected reality. It turns out, I couldn't have done anything different. But that converts my "what ifs" into "why her?" My beautiful little girl did nothing wrong. Yet from the moment of her conception, she was destined to die. Even as she grew, she was simultaneously developing, and dying. She could never have lived, she was born to die. She literally never had a chance, and that brings with it a new indescribable pain, and pity. Pity I never wanted to feel for my own daughter, I wanted to believe I had protected her.

Any parent will tell you there is nothing worse than when your child is ill. Your parental instinct to protect is never stronger than when you wish with all your heart you could make your child better. Now I have to accept and come to terms with the fact that Holly's mind was trapped in a body that was predestined never to work properly. She was completely immobile, unable to move due to her muscle condition. Her limbs were so rigid, her arms broke when she was lifted from my womb. No, it was not my fault, but I wonder now if she tried to respond to my voice throughout pregnancy, and couldn't. I wonder if she felt pain, and couldn't react. I wonder if an unborn baby can experience frustration. Did she feel trapped? Or is that an emotion we only come to understand with age and experience of life? I wonder if she suffered, if she tried to cry at birth. If she felt the attempts to resuscitate her. If her lungs were desperate for breath that her body was unable to provide. I wonder if she fought to breathe, and couldn't, or if she was already unconscious. Did she die in comfort, and peace, as I'd wanted to believe? Or did she die in pain?

With that knowledge, three words keep replaying in my head like an unwanted earworm. Three words I never wanted to associate with her. Three words I wanted to reject, and I hoped with all of my protective mother's heart did not apply to her. Seventeen months after her death, I can't stop thinking, "poor little thing."