Acceptance

Posted on Posted in Religious Perspectives, Skeletal Dysplasia, Stories
Looking back now, I realize how naïve I was.

by T.T.

In a week, we will be marking one year since we said goodbye, and I wanted to reflect upon it all. It took nearly nine months for me to even start to come to terms with what happened to our family in the last year, and the decisions we made. It led to a new phase of tears, but it felt somewhat different than in the early days.

For a long time, I struggled to even allow myself to grieve the loss of our sweet baby, Daniel, because of the massive guilt I felt. Though raised Catholic, I’m totally liberal in ways that go against Church doctrine—pro-gay marriage, pro-birth control, pro-choice. The first two were “goods” in my view, but the last one, abortion, I saw as a “bad” but a necessary evil; critical for women’s rights and self-determination, but something I viewed personally as objectionable, a thing that I would never partake in. I was an educated woman in a stable relationship—there would be no need for an abortion. And I thought that if my baby were sick, I would stick it out.

Looking back now, I realize naïve I was! But for months I had doubts about whether we had done the right thing. I worried that I had ignored “signs” in the days before the procedure telling me that I shouldn’t terminate the pregnancy. I wondered, when the doctors told us that we were facing a very poor prognosis, whether they meant that our son’s condition would be lethal or that he would live but be very sick.

For the first couple of months after the loss, I lived in a fog. I remember only snippets. I started back to work. I cried every morning in the shower. I wrote a paper and presented it at a conference. I stared at the birds circling the sky as I waited for the washing machine to fill. I got on the treadmill because I needed the endorphins and I didn’t want to go over the edge. I read dozens of stories on Babycenter.com’s TFMR board and cried in my office. I put copious amounts of eye drops in my red eyes. We took a family trip to Paris so our girls could see Disneyland. We needed to reconnect.

After we got through that initial phase and we got past baby’s due date, I started to rehash the consultation we had with the team of specialists at the maternal-fetal medicine (MFM) institute at National Children’s Hospital. Because even after seven weeks of tests: genetic testing, blood tests for infections, four ultrasounds, and an MRI, the doctors weren’t able to put a name to our son’s condition.

The doctors believed it was a form of skeletal dysplasia, but the combination of anomalies he had didn’t fit the more common forms of the disease. He had short long bones, short ribs, a small recessed jaw, clubbed feet, cleft palate, and some deformity in his spine. On the MRI, they could see through his skull to his brain, and so they suspected that the mineral content of his skull bones was abnormal. But he also had a massive cystic hygroma (swelling around the head and neck), a symptom not usually associated with skeletal dysplasia, and never a good sign.

Most of us associate skeletal dysplasia with dwarfism or “little people.” How I wished our son would be a little person. We could deal with that. What I didn’t know before this pregnancy was that most people who live with dwarfism have a milder form called achondroplasia, which isn’t diagnosed until the third trimester or after birth.

However, there is a multitude of different skeletal dysplasias, many lethal, due to cardio-respiratory failure shortly after birth caused by a small rib cage that restricts the growth of the heart and lungs. In our case, one of the ratios used to predict cardio-respiratory failure (ratio of femur to abdomen) was within the range considered lethal, but the other ratio (femur to chest) was not. This was one of the things that I kept coming back to in my guilt-ridden phase.

After a battery of tests, we sat down with the MFM specialists at Children’s to discuss the prognosis. They couldn’t give us a precise diagnosis. The genetic counselor spread her hands apart to demonstrate that skeletal problems fell on a spectrum of mild to lethal. Then she moved the hand that had been at the “mild” position much closer to the lethal hand to indicate where our baby was. It looked to me that they were putting him at about a 9 out of 10 in severity. The doctors said that too many things were wrong. In my husband’s mind, it was clear that the doctors did not think he would live. But it haunted me that the doctors never actually said the word lethal. It took me nine months to accept that that’s exactly what they meant.

For months, I beat myself up, thinking that maybe the doctors didn’t mean it was lethal. That maybe a miracle would happen if I waited and prayed, as my mom tried to convince me to do. That I was a coward, and that I should have continued the pregnancy until I miscarried, or the pregnancy became dangerous to my health, or made it to term, at which point I would have needed a C-section because of the swelling around my baby’s head.

No one was pushing me to terminate but I knew that neither my husband nor the medical team thought it was a good idea to continue. For the first six weeks of our nightmare, I refused to even consider abortion. I hoped that things would improve or that his condition would be operable.

But as I approached 20 weeks, with more bad news at each appointment, I started to waver. I played out the different scenarios in my mind, and none of them were good. If I were lucky, I would miscarry or have a stillbirth. I prayed for it. (How awful does that sound, that prenatal death would be the best-case scenario?) The worst-case scenario would be that he’d be born alive and that we might not legally have the option to refuse medical intervention. My perinatologist told me that this was a possibility. At this point, I believed that one of two things would happen: either the doctors would be unable to intubate him because of his complicated anatomy (recessed jaw and swollen neck) and he would suffocate, or the doctors would successfully intubate, but then he would have to live attached to machines. Both of those scenarios scared me to death. It was a level of suffering that I just could not subject anyone to—not my baby, not my daughters, not my husband, not myself.

I decided that the only thing worse than ending the pregnancy would be to continue it. I felt his kicks and I didn’t want to say goodbye. I loved him. I wanted desperately to keep him safe and warm inside me. It just wasn’t possible. I’ve now accepted that.

Some women continue a pregnancy despite a poor diagnosis. I applaud them for their strength. They are our sisters and deserve our full support and comfort. But my husband and I decided that this was not the right path for us. So, we let him go.

During the 2016 presidential election campaign, some of my brave friends from the EWP private support group publically posted their termination stories online in response to the acrimonious political debates. They were met with vitriol from hard-core pro-lifers who fervently believed that regardless of the baby’s prognosis or the danger to the mother of continuing a complicated pregnancy, abortion could never ever be justified, and a miracle might happen if they’d just had faith. At first, I found these comments very hurtful. I had failed. I lacked faith. But I came to realize that their position was utterly unfair. With babies this sick, are we really meant to put our lives in danger, and risk that our living children grow up without mothers? Do these same people shun their doctors’ advice, opting for prayer to be healed? Because that is exactly what they were asking women like me to do. I started to forgive myself.

Up until this happened, I had never experienced any major trauma or loss in my life. This has been the absolute hardest thing I’ve ever gone through. Sometimes I wish none of this ever occurred. Other times, I try to see his short life as a blessing. It’s natural to search for meaning in tragedy, regardless of whether or not we believe these things happen for a reason. I’m working on finding my purpose, on being more patient, more loving. I’m still trying to figure it all out, how I live my life from here on, and what it means for the practice of my faith.

I like to believe that Daniel is watching over his big sisters. One night, several months after he left us, my four-year-old was sleeping in my bed because she had a fever. Before sleeping, I thought about Daniel (as I often do). I felt a wave of immense love pass over me and through me. I wept uncontrollably, but not out of sadness. I felt his presence. I felt love. It was the first moment of peace I’d known in nearly a year. I hope I’ll be worthy enough to meet him again in the next life.

Just a couple of weeks after the termination, I read a beautiful passage from a New Yorker piece called Can Trauma Help You Grow? by David Kushner. I’ll end with a quote from that:

In 1975, three years after my brother died, my mother took to her journal to reflect on what she had found for herself: a way of living with death that brought new meaning to life. “I treasure what I treasure,” she wrote. “I am aware of the temporariness of relationships and life itself. I am aware of what matters and turns me on. Did Jon give me this gift? I believe so. My sweet, sweet, sweetness. I thank you for that. I carry you with me forever unseen now, just as I did when you were snuggling in my uterus … unseen but filling my belly and my mind, part of our family even before you were born, part of our family now after your life. Thank you for this capacity to love and understand. Do you still know that you are loved?” —David Kushner

 

 

CC0 Public Domain image courtesy of Pexels via Pixabay