The choice we made for our family

When people meet my family, they see the four of us: my husband, me, and our two living children. But when I think about my family, there are six of us. I have struggled with this discrepancy for a long time, and it is one of the main reasons why I share my journey so openly and widely. I need the world to see my family as I see it, so that all my children are known and remembered.

Thanks to my family’s advocacy work, as well as my husband’s more than 2,000 performances as Alexander Hamilton in productions of “Hamilton” in Chicago and New York, more people know about our daughter Adelaide, who passed away just days before her fourth birth. birthday. Throughout her life, Adelaide was treated for epilepsy, hypotension, mast cell activation syndrome, dysautonomia, and a variety of other symptoms at medical centers across the country.

Her team of doctors eventually determined that her underlying condition, which was not discovered until years after her death, was neurodegenerative. Sitting around a large table in a regular hospital conference room in May 2019, her doctors told us that Adelaide’s brain was deteriorating and there was nothing they could do to stop, slow or reverse it.

I knew my daughter was dying, but I remained willfully naive about how long we had with her. Then the medical intervention intensified, her cries of pain became more frequent, and her ability and desire to interact with us dropped sharply. I could no longer ignore her suffering just because I didn’t want to imagine life without her.

With hospice services in our home and her medical team on speed dial, we made the gut-wrenching decision to end medical interventions and allow her to pass away peacefully. We decided to let her die because, as her parents and after consulting with her medical team, we decided it was the right thing to do.

We have since learned that the likely cause of Adelaide’s medical problems is related to her DENND5A gene, which is responsible for creating stem cells during brain formation in utero. All we could ever do was treat her symptoms and love her for as long as her body would allow.

This was not the first time I had to make this decision regarding one of my children. But this was the first time my decision was met with obvious compassion.

Five years ago, I was lying on a table in a fetal medicine doctor’s office when an ultrasound technician ran a wand over my belly. Our 20-week ultrasound the day before had revealed some problems, so I had to have a second ultrasound in two days. I tried to count the holey tiles on the ceiling above me, but the tears kept blurring my vision. Miguel and I already had one boy and were expecting another. Plans for his nursery were in full swing, although we were still discussing the baby’s name. Meanwhile, my father started calling him Elvis. With every tile I counted, our reality became harsher.

Our baby was not okay.

Elvis was not okay.

We didn’t leave the hospital that day with a stack of fuzzy black-and-white ultrasound photos. Instead, we left with a fatal diagnosis of severe thanatophoric dysplasia and two phone numbers. Elvis’s chest cavity was too small, his heart too big, and his lungs underdeveloped: he was going to suffocate and die at birth. These were the phone numbers of two doctors who could perform an abortion if we decided to terminate it.

The decision was painful, but it was not a difficult decision to make. Especially when the word “thanatophorous” in Greek means “bringer of death.” We thought about our two-year-old son, Jackson, and how hard it would be for him to know that when Mommy went to the hospital, she wouldn’t be coming back with his brother. We thought about my physical health: the birth of a child always involves risks for the mother’s health; abortion was safer. We looked at my mental health, I was already prone to depression and anxiety. It didn’t help that I worked in customer-facing sales and had to field questions and comments about my growing belly from well-meaning strangers all day. And, of course, we thought about Elvis. By terminating a pregnancy, we could prevent a painful death from suffocation.

A week later I felt Elvis move inside me for the last time. They induced labor, put me to bed, and when I woke up, I was empty.

I was unprepared for the grief I felt for a child I never got to meet, hold, or smell. I wasn’t prepared for the milk to come in while I was taking a shower. And I wasn’t prepared for the judgment I felt when we told people what we did to protect our son. People who I thought cared about our family, people without medical degrees and wombs, people who did not hear what the doctors explained to us, told me that I had killed my child.

Yet despite the disdain, I remained grateful to live in New Jersey, a state where abortion after 20 weeks is legal. I was grateful that I did not have to shoulder the emotional and financial costs of taking extra time off from work and traveling to another state for the procedure. I was fortunate to be able to recover and grieve at home, surrounded by family.

I share my story and implore you to understand it, in part so that Elvis and Adelaide can be recognized and remembered without hesitation or blame. I made the same decision for both children. The only difference is that one of these babies was still living inside my womb when I made the decision, and the other was living outside. However, one solution is completely legal in all 50 states, while the other is not.

Not a day goes by that I’m not reminded of people forced to make similar decisions, but now in an even more hostile post-Roe environment. These hopeful parents desperately want their children. They love them and will always mourn them. The assertion that women’s health care, and abortion in particular, has become a political talking point undermines the impact that families are already feeling from the Supreme Court’s Dobbs decision, as well as concerns about additional restrictions that could be put forth by a president who “… proudly I am the person responsible” for this decision.

As parents, we fight for the best interests of our children every day. Some days it looks like teaching them how to share, other days it might be guiding them through the college application process. For others, it means making decisions about the life and death of their beloved child. And no matter their age, pregnancy or otherwise, this must include the hardest decision of all—when it’s time to let them go.

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