The Story of Alexandra

Posted on Posted in Induction/L&D, Skeletal Dysplasia, Stories

By Catherine

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I wanted her home, where she belonged, but I dreaded that moment when they handed me the remains of our dream.

I am writing this to share a recent pain suffered by my husband and I, hoping that our story can be told to others like us. That those who have had to make the worst choice any parent could be faced with would know that they’re not alone and that they don’t have to feel like they’ve done anything wrong.

I was 21 weeks pregnant with our first child when a routine ultrasound gave our doctor some concerns and we were referred to a specialist. I went to a geneticist. There, I was told that my baby, a girl, had a very rare, very severe and very fatal form of skeletal dysplasia. They weren’t sure which form of the disease it was, but what they saw gave them no doubt: my daughter had no chance of survival.

On top of abnormal shortness of the arms and legs, our baby’s chest was severely underdeveloped. Although her heart was perfectly normal, her lungs were practically non-existent. If she made it to term, I was told, she would live for at best, an hour. And that hour would be filled with pain and fear and suffering because she would not be able to breathe. It would be like drowning without the water.

A second opinion verified the prognosis, but went further because they found that the skull had developmental problems as well. None of her bones were strengthening as they should, and if I carried her to term, the birthing process would kill her. Her skull would, essentially, cave in, crushing her brain. But her chances of even another month in the womb weren’t good. Because of the underdevelopment of her chest and the steady, normal growth of her heart, she would most likely die of heart failure when the heart outgrew the chest.

We had to choose. We could terminate pregnancy and save her from the suffering her eventual death would cause her, or we could wait for nature to take its course. She would die. The only question was, would it be on her time or ours?

Neither my husband or I ever believed we would need an abortion. Not that we’d presume to tell another what to do with her body, but we didn’t think abortion would ever be something for us.

Just a month before I got pregnant, we were told that it would be very hard for me to conceive. Not impossible, but difficult. Then, there I was, pregnant. We were so happy. We both wanted—want—children. It was a miracle.

And then this. To have a dream, and to have it stripped away. I couldn’t bring myself to say the words my husband and I had decided on. Really, there was no choice. What parent could allow their child to suffer, even for a minute, if they could prevent it? We couldn’t let her be hurt, not our little girl. That, and we were warned of the risks to me, if we waited. Among others, infertility and death were on the list. The thought of losing me made my husband’s mind up for him. For my part, if by my death, our daughter could have lived, I would have gladly made the sacrifice. But that wasn’t the case.

Once the choice was made, we had to choose the manner in which the termination was to be done. We could have the dilation and extraction (D&E) or  we could have an induced labor abortion (L&D).

Editor’s note: Not everyone is given a choice between procedures; it often depends on what your medical care providers allow, length of gestation, insurance considerations and other factors. 

We chose induction. After that, we had to choose whether or not to have them inject a drug into the amniotic fluid that would cause fetal heart failure.

At first, I was afraid that if she was born alive that she would suffer the way the first doctor had described and make all of this for nothing. But my husband wouldn’t hear of it. I was reminded then that at level of development, the baby hadn’t developed consciousness yet. Sub-conscious yes, but consciousness, no. I don’t know if that’s true or not, or just what a doctor said to help ease off the guilt of the decision. And I don’t want to know.

Editor’s note: Whether or not to have KCL injection isn’t always a choice. Many hospitals and clinics now require it to prevent live birth and policy-required (but futile) interventions by hospital pediatrics, or incidents of lawyers being assigned by third parties with political motivations.

I was 22 1/2 weeks pregnant when my labor was induced. My parents were there, having flown up from North Carolina. My mother-in-law was there. My husband never left my side.

The next day, Alexandra Nicole, was born. She was so tiny, so precious. And, for 22 minutes, alive. I just held her, crying, telling her I loved her. She never gained consciousness, thank God. She just slipped away. And I held her as long as they would let me. She was baptized, given last rites. They had wrapped her in such a way that she almost looked normal, healthy.

I was released from the hospital later that day, after a small, hastily-arranged memorial service in the hospital chapel. Alexandra was sent to another hospital for X-rays and testing. The next day we had to arrange her cremation.

Two years have gone by and I’m finally really able to talk about my baby girl. In that time, I’ve shed more tears than I ever thought possible. The worst moment was when we had to go back to the funeral home to identify our daughter’s body before cremation. I held her one last time, cradling her tiny, fragile body in my arms until I couldn’t bear it anymore. She was so cold…so small. Then we had to go back to the funeral home to collect the small pink urn that would bring our baby home to us. At that time, I wanted her home, where she belonged, but I dreaded that moment when they handed me the remains of our dream.

In the time since she died we were given her diagnosis. Alexandra had Achondrogenesis Type II. According to the research I have been able to find on the disease, it is universally fatal. Follow-up prognosis was even worse after the autopsy, or at least that’s what we were told. Frankly, it’s done. I don’t want to know much more.

The hardest thing for me to overcome, besides the crippling grief, is the word abortion. I’ve been avoiding those family and friends whose views on the subject are extremely against taking the situation “out of God’s hands.” In moments of grief-fueled rage, I could scream that God’s hands are what doomed my daughter to death. I see bumper stickers on cars that proclaim “Abortion: It Stops a Beating Heart”, “Abortion is Murder” and other such “gems of wisdom” and I feel sick. To me, my husband, our families and our doctors, what we did is no different than parents would choose to take their children off of life support.

If those who judge us knew the pain, the anguish, of knowing that no matter what you do, your child will die, and of having to decide, having to live with what was so close and was so cruelly snatched away, they wouldn’t be so quick to judge. I hope.

I would tell those who have had to make this heartbreaking decision to hold on. Hold on to your loved ones. Especially to the mothers. The emptiness is the worst thing. To feel your body shift back after shifting to make room for that precious little angel. Mothers, hold on to your husbands. I’m lucky in mine; he’s been a rock. The loving shoulder to cry on. And cry and cry. Too often, the loss of a child destroys a marriage. Cling to each other. Don’t let the zealots or the emptiness or the shattering grief tear you apart because then your loss is doubled. And don’t destroy yourself. Even if you have to force it, take care of yourself. Eat. Sleep. Take whatever medication given to you to prevent infections and such. See your doctor. Talk. Talk in groups, talk to your family, talk to your spouse. Talk.

So, now I send this message out into the void, praying that it will be heard. That those who would judge harshly are softened. That those who have lost will be heartened. That everyone will know that I have a daughter, a beautiful little girl, Alexandra Nicole, one of the angels now until I can hold her again.

photo credit: The madness of daisies via photopin (license)