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Down syndrome parents: Deciding against abortion, searching for a cure

Posted By John Walsh, Foster Children's Project, Legal Aid Society
March 1, 2017

Five years ago, I had never had to confront the issue of abortion. My wife Jacki and I had four children already, and the thought of terminating a pregnancy was the furthest thing from our minds. All I knew was that the country was deeply divided on the subject: abortion dominated every election cycle.

Jaime Faith came along in the summer of 2011 and changed everything I thought I knew. She would be our fifth child (!), so we were a little older, which carries an increased risk for the baby, including an increased risk of Down syndrome. Still, during my wife’s pregnancy with Jaime, our OB/GYN told us not to worry about Down syndrome. After all, she had never delivered a child with Down syndrome. Likewise, our pediatrician told us she had never cared for a child with Down syndrome. Great, I thought. Nothing to worry about. Surely it must be rare.

And then the specialist said those six words no parent wants to hear: “There’s something wrong with the baby.” Hearing this was like an out-of-body experience for my wife and I. What he said next was perhaps even more surreal: “We need to talk about what you want to do, but we have time. You’re still in the first trimester.”

Wait, what? I remember wondering, “Who is he talking to?”

I can only compare our feelings in this moment to what it must feel like in a foxhole during war. Your officer yells, “Charge!” The soldier next to you stands up and gets his head blown off. Then the officer looks at you and yells, “Charge!” What would you do? The answer is: unless you’ve been there, you don’t know.

Yet regarding this particular foxhole—a pre-natal diagnosis of Down syndrome—we do know what the majority of people would do: 70 to 90 percent of parents choose to terminate the pregnancy. Despite what I thought I knew, It turns out that America isn’t that divided on abortion after all. This explained our OB/GYN’s and pediatrician’s complete lack of experience with T21 kids. They had never delivered or cared for any because they had all been terminated.

Turns out, Trisomy 21 is actually not all that rare. It’s the most commonly occurring genetic birth disorder in the United States. And yet, the abortion rate among Down syndrome pregnancies is so high, and the blood test to detect Down syndrome so easy, that it’s affecting the level of federal funding into research for a cure. The National Institutes of Health only dedicates about $25 million to T21 research, out of a $32 billion budget.

After all, for all intents and purposes, the condition is “cured” through abortion. Today, babies with Down syndrome are so rare they are actually in demand on the private adoption market. Only in America.

I’d like to say my wife and I “chose life” or were “pro-choice” or whatever, but in reality, those terms are bulls*#!. When you hear those six words, you don’t “choose” anything. You react. Usually out of fear, ignorance, shame, panic, or something else. After the doctors reminded us we had three weeks left to “choose,” and while I prayed for God to deliver me from this unimaginable fate, I remember being grateful that I lived in a country where the decision was between me, my wife, God, and the doctors. Whatever we decided, the decision would be ours and we would have to live with it. Not anyone else.

You may think it’s wrong to have an abortion, but that doesn’t mean that, given the right circumstances, you wouldn’t travel to Canada to get one if you had to. Remember the foxhole. If 70 percent to 90 percent of people are terminating, then what makes you so special? And just because all those parents terminated their pregnancies, it doesn’t mean they “chose” abortion. None of them wanted to be put in that place of fear and hopelessness. They just wanted a healthy baby, and they were being told there was no hope. Jacki and I were in that place. And I can’t even say we were in it together. I think the experience is drastically different for a woman who is carrying a child than for a man. So we could not even really effectively communicate with each other about what we were going through. From our doctors, I felt a very firm push toward making sure we knew there was a way out—termination—but also a very hands-off approach to leaving the decision to us.

 

“She’s Perfect”

When Jaime was born, she came out crying loudly, her eyes closed. She looked just like all our other babies had looked. Ah ha! Stupid doctors! I thought.

“She’s perfect,” I whispered to my wife.

They put her on the table and the neonatologist and nurse were doing their thing as Jaime cried that newborn wail. For some reason, I said, “It’s okay, Jaime. Daddy’s here.” She immediately stopped wailing, turned her head slightly, and opened her eyes and looked at me. Her neonatal nurse gasped and said to the doctor, “Oh my gosh, look, she recognizes his voice!” In that moment, my eyes met Jaime’s for the first time and I heard her say two things in my head: “Yes, I have an extra chromosome. And yes, I am perfect.”

So how could these two statements be both true? Well, I’m not gonna lie. It’s a lot of hard work. Because what most doctors know about Down syndrome, you could probably put on a matchbox. And it’s not their fault. It’s been like that since the beginning, since a British doctor named John Langdon Down took over the Earlswood Asylum for Idiots. One day in the 1860s, Dr. Down looked around and said, “Hey, some of these idiots look alike. I’m going to call it a syndrome.” He theorized that people with T21 were a step backward on the evolutionary ladder. No one would know it had anything to do with an extra twenty-first chromosome until 1959, when Jerome Lejeune made the discovery.

So the name Down is kind of offensive and the word “syndrome” is kind of misleading. Trisomy 21 is the better description. And instead of a syndrome, it’s a disease or a disorder. Jaime is not missing anything in her body. She has something extra. That extra thing does some good stuff and some bad stuff.

We needed to figure out how to regulate the bad stuff. In other words, we wanted to treat her disease.

 

The Search for a Cure

Treating the extra chromosome is something we began to research almost immediately after Jaime was born. At first, it appeared there was, again, no hope. We went to some traditional doctors, who seemed to not understand what we were asking for. We’d hear things like, “You want to treat her thyroid so she’ll grow? No, her numbers are okay. It’s just the Down syndrome.” Or, “You want to stimulate neurogenesis to fight off the loss of neurons? That’s just part of Down syndrome.”

It seemed like there was a lot of “That’s just Down syndrome” and not very much acknowledgement that the extra chromosome was putting a lot of oxidative stress on her cells, and there are a LOT of ways to blunt and treat the effects of oxidative stress. There is also some pretty solid science behind what can stimulate neurogenesis, or the growth of new brain cells.

Not one doctor we consulted knew anything about this…but you know who did? Other parents. And they were sharing their knowledge and creating a whole new generation of kids with T21 who were being aggressively treated. Sometimes with therapies, sometimes with medications, sometimes with supplements, and now even with cold lasers. And these kids were learning and growing and developing and getting jobs and living full lives.

Very early on, we took Jaime to a neurodevelopmentalist to put her on a program of learning and stimulation. The little boy before us was just leaving. He was a 2-year-old who had been treated since birth. I sat stunned as he read me a book. When he finished the book, he turned it over and read me the copyright indicia, including the publisher, city, and date. Flawlessly. The neurodevelopmentalist explained to us that children with T21 can learn. She assured us that Jaime would be reading by the time she was three. By the time she was two, she could sign almost one hundred words from flashcards and use the signs in her daily life. Why was I surprised? She had told me she could learn the day she was born! She had learned the sound of my voice in the womb. Now, again, she was doing something none of my other four gifted children had done: learn to read and sign as a 2-year-old. Had I known this was possible when she was in the womb, our outlook would have been so different.

So, five years after hearing those six words and having to make a “choice,” I can say that I’ve learned my views on abortion don’t matter. I think what I’ve learned is that we shouldn’t judge other people unless we’ve walked in their shoes. And that the idea that this country is split over abortion is really a myth. When kids with a prenatal diagnosis of T21 are being terminated at a rate of up to 90 percent, it’s kind of hard to argue that the country is divided. Wouldn’t it have been nice if our last election had been decided by 90 percent? That would be a mandate.

As for Jaime, she has an amazing spirit and continues to thrive. She can do just about anything any other 4-year-old can do. There are some things she’s not so good at, but the same can be said about my four other gifted children. I’ve learned to reject the term “disabled” and prefer “differently-abled.” All five of my kids have different abilities. Some are great at math, some are artistic, some are sensitive, some are funny. I think that’s true of humanity. Jaime is really struggling with speech, and that’s okay. Like I said, it’s hard work. She can read, she understands everything you tell her, and she can sign. And she can walk through a crowded mall past some two hundred people and stop suddenly in front of one woman and extend her arms to hug her. After her hug, the dazed woman tracked us down and told us that she had a son with Down syndrome who had passed away. She wanted to know how Jaime knew she needed a hug. I have no idea. She does it frequently. Different abilities.

So when the doctor told us there was something wrong with her, I wish he also would have told us there’s a lot that’s right with her too.

About John Walsh, Foster Children's Project, Legal Aid Society

John Walsh is a children’s attorney and runs the Foster Children’s Project at the Legal Aid Society in Palm Beach, Florida.  John attended Florida State University, where he majored in film and law. John lives in Boca Raton, Florida, with his wife Jacki and their five children in an old house, not far from the beach.

For more information on exciting T21 research, visit LuMind. This research could be more important than most people know because people with an extra 21st chromosome are A) very resistant to tissue-based cancers, B) more likely to develop acute leukemia, and C) almost certain to develop early onset Alzheimer’s.  So the cause or cure for some of humanity’s worst killers could be hidden on the smallest chromosome, the 21st.

To get connected to other parents who are treating their children, visit Down Syndrome: A Day to Day Guide and The Conscious Pod.

 

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  1. Very interesting point about abortion stance vs. reality of decisions people make.