Choosing Life and Beating the Odds: Accepting Down Syndrome
When my husband and I found out we were having another baby, it was a surprise. Our son Ben was only six months old at the time and Matt was preparing to leave for another deployment. He won't be home for the birth of this baby. It was definitely not the way we had planned to have our next child, but we shrugged our shoulders and started making plans. The pregnancy began the same as it did with Ben. I went to the naval hospital, confirmed the pregnancy, and made arrangements to go to the same practice out in town where I went while pregnant the first time. And, like with Ben, I opted to have a first trimester ultrasound called the nuchal translucency screening.
This test measures the thickness behind the baby's neck. That, plus a blood test, tells you if there's a chance the child has Down syndrome. Like most of my friends, I got the test done purely for the ultrasound -- to get a chance to see the baby for the first time. And, to my shock and dismay, the test came back positive. There was a 1 in 6 chance the baby would have Trisomy 21, or Down syndrome. The doctors were quick to tell me that there was no need to worry, that these tests come back with false positives all the time, and that there was still an 80% chance that the baby would be perfectly healthy. Still, to be safe, I was referred to a specialist an hour away to get a higher level ultrasound done.
Matt had not yet left for Afghanistan, so he was able to come with me to that first appointment. We saw the baby, and found out that we were having a boy. His little heart beat as he squirmed all over the screen. He had adorable little fingers and toes. To us, he looked perfect. But the doctor was concerned, and pointed out that there were several markers for Down syndrome and also a possibility of a heart defect. The large amount of swelling behind the neck, he told me, could be a sign of a heart defect which could lead to heart failure and stillbirth. Matt handled the news pretty well, but I cried the entire way home, and spent the rest of the night feeling depressed and miserable.
By the next day, I had started to become angry. There was nothing wrong with the heart, the doctor had admitted that himself. And he also had said, when asked by my husband, that the swelling could be perfectly normal and sometimes goes away on its own. Why would he scare us so much when there was no definitive evidence of anything actually being wrong? I had one more appointment with this doctor, where they would do another ultrasound and I would have the option of getting an amniocentesis done, but I swore that if he was as negative as he was the last time, I would insist on seeing another doctor.
Two weeks went by, and Matt deployed to Afghanistan. We had talked about it over and over, and eventually, with his input, I decided to get the amnio. An amniocentesis is done to determine if there are any birth defects. The doctor inserts a needle into your stomach, and then into the uterus, and withdraws amniotic fluid. There is a small risk of miscarriage, and I was also concerned about the pain. But we both needed to know if this baby had Down syndrome.
The day of the test finally came. A friend whose husband is deployed with mine came so I wouldn't have to be alone. We saw the ultrasound and again marveled at how cute and perfect the baby looked. We could see an adorable little nose, the heart beating, and a baby that just did not want to stay still. He was too cute. This time, the doctor was admittedly more optimistic. The good news was that all four chambers of the heart were there and beating, which he explained is the best you can hope for at 17 weeks, considering the heart is still too small to see anything more detailed. And the swelling behind the neck? It was still there, but hadn't grown, which he said was also a good sign. Usually, he told us, the swelling grows over time. I felt more optimistic that nothing would be wrong. As I kept being told over and over again, high-risk doctors have a tendency to go for the worst-case scenario. Plenty of people had been told that their babies had Down syndrome, and then it turned out the doctors were wrong. I was young, the baby was healthy. There was probably nothing to be concerned about.
A few days went by, and I was surprisingly calm. Then, around 6:00 on a Friday night, the phone rang. It was someone from the practice, asking if I could hold for my doctor. I knew right then that it was not going to be good news.
The results of the amnio were back: male, positive for Trisomy 21, or Down syndrome. I stayed calm on the phone, listened to what the doctor said, and responded appropriately. When he asked if I had any questions, I said no. We made my next appointment, and then ended the conversation. I almost immediately burst into tears. I called my mom and then my best friend, telling them the news. I spent most of the night crying. How could this be happening to us? And why? I'm 27 years old, I kept thinking. The chances of this happening are around 1 in 1000. Why us? I was crushed, which made me feel even worse. This was my child, after all. What kind of mother acts like this? He's still my baby, he just has Down syndrome. Why was I so upset? I kept thinking that a good mother wouldn't be upset. Matt was luckily able to call, by coincidence, that day and he handled the news like a pro. To him, it was almost a non-event. OK, he's a little different, but so what? He's still our son and we'll handle it. I wished that I could be as strong as he was.
The next three days were an emotional roller coaster. Every time I thought about the baby, tried to talk about it, or started to research Down syndrome, I would just start crying again. I felt lost and helpless. I didn't know what to do or what to think. Termination was an option, but not for us. Abortion never even entered my mind -- as scary as the diagnosis was, there was no way I would kill this baby. He was ours and I loved him. I was just terrified. What if he has heart problems? There's a good chance he could have open-heart surgery within the first few months of his life. I would picture my baby with IVs and needles and wires everywhere and just start crying again. Would he ever be able to live a normal life? One thing I was already very clear on, and had already warned my family and friends about: this baby was not to be treated any differently than Ben. If anyone did, they would not be allowed in my children's lives. Period. But I can't control strangers. I can't control how other kids might tease him for being different. Is he going to live the rest of his life with people treating him like he's dumb or useless? What kind of future could he have? Thinking about that scared me.
After a few days of ups and downs, I woke up one morning and started to have a meltdown. I put my head on my desk and just started sobbing uncontrollably. But almost immediately, Ben woke up and was crying in his crib. I pulled myself together -- when you have a kid you don't have the luxury of surrendering to your emotions -- and went into his room. His face lit up when he saw me; he laughed and squealed and smiled. I hugged him as tightly as I could and wondered if somehow he knew that I needed him to cheer me up right then.
Later that day, I read Emily Perl Kingsley's essay "Welcome To Holland" about learning you will be a parent of a special needs child. She talks about how having a baby is like preparing a trip to Italy. You read all the guidebooks, you learn Italian, and plan to see all of these amazing Italian landmarks. But then you get off the plane and realize you're in Holland. And while you were supposed to go to Italy, all your friends have gone to Italy, and you had dreamed of Italy your entire life, now you're in Holland and it's where you must stay. But after the initial confusion and fear goes away, you start to notice that, while Holland is slower-paced and less flashy than Italy, it has all of these lovely, wonderful things about it. Losing that dream of never going to Italy will always be painful, but if you dwell on that forever, you'll miss out on all of the wonderful, special things about Holland. I cried reading it -- as usual -- but it marked a turning point for me. For the first time, I started to realize that this wasn't the end of the world. This wasn't what I had planned, and never in a million years did I think that I would ever be the parent of a special needs child. And while everything will be different now, that doesn't have to be a bad thing. I was still scared, but I was ready to start moving past the fear and sadness and confusion.
I still cried occasionally. But one day, that stopped as well. I was researching Down syndrome. The condition occurs when there is an extra copy of chromosome 21, thus the name Trisomy 21. Most individuals are born with 46 chromosomes. A person with Down syndrome has 47. It is the most common cause of all birth defects. And having a baby with Down syndrome means an increased risk of multiple health problems: congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Despite all of that, the life expectancy has soared recently to around 60 years old today. There are usually mild to moderate cognitive delays, depending on the severity. Older women have the highest risk of having a baby with Down syndrome, but most of them are born to women around my age or younger, because younger women simply have more babies. No one really knows why some babies develop Down syndrome, but research is being conducted that has scientists hopeful that they may one day improve or even correct the condition.
Then I came across another startling fact: most babies with a chromosomal abnormality, like Trisomy 18 or Trisomy 21, end up as miscarriages -- doctors estimate approximately 80%. Hearing that changed everything. I realized this baby -- who we decided to name Wyatt -- was our little miracle, a boy who had beat the odds already just by surviving. I cried again, but this time, they were tears of joy.
I finally was able to start being hopeful. We're lucky in so many ways. Modern medicine has advanced so much that people who have Down syndrome can now live decades longer than ever before. And you can see great examples of kids with Down syndrome in the media now, too. There's the little boy in the Target and Nordstrom ads, the girl just signed to one of the UK's most prestigious modeling agencies. It gives me hope that maybe we're becoming a little more accepting of people with disabilities. I'm still scared that he'll have heart defects. I'm still scared that he'll be teased. But those fears don't overwhelm me anymore. Instead, I think about how lucky we are to have the Exceptional Family Member Program through the military. I think about how, with early therapy and by treating him the same as I treat Ben, he could easily grow up to be just like any other little boy.
For the most part, everyone I've told has reacted well. Only one acted like it was the end of the world, which I think is a surprisingly good track record. Most people have told me that it's OK to be emotional and scared. Many of them have mentioned Sarah Palin, and pointed out that even she considered abortion when Trig was diagnosed with it. But that's something I just can't understand, and I'm in those shoes now. Around 90% of babies diagnosed with Down syndrome end up being aborted, which is something that I find heartbreaking. How can you do that? I just don't get it.
I've seen this baby now, multiple times. I've seen him moving, felt him kicking, and watched his little heart beating. And I cannot fathom how anyone can see that, over and over and over again, and then kill that baby just because... of what? Because they have an extra chromosome? As scared as I am about everything, I haven't been so stupid as to think that somehow having Down Syndrome means that Wyatt will have some kind of horrible life. Abortion has been mentioned to me several times as an option by my doctor (and he has also stressed that most women who have babies diagnosed with Down syndrome in this area do NOT abort), but the thought has always just horrified me. How could someone do that? Your child has a disability, so you kill it? I am now in that situation, and -- sorry, Sarah Palin -- but no, I don't understand. I don't understand how anyone could even consider it. As scared and emotional as I have been, abortion has never entered my mind. I sincerely hope that the mass killing of babies with Down syndrome ends. Maybe if so many mothers didn't kill their children because they are different, we as a society would have a better view of people with special needs.
I'm still not entirely sure where I go from here. I have a lot to learn, and a lot of planning to do. But, for the most part, instead of being scared, I'm optimistic. I'm excited to meet my son and see what we can accomplish in this world together. I am determined to give him the best life I possibly can, and I am also determined to make sure that he is given the same treatment and the same opportunities that my other son gets. It will be a lot of work, and a lot of hard times. But I can't help but think that there will also be a lot of laughter, and happiness, and hope for the future -- just like with his big brother. People have said that God chose Matt and I to be the parents of this baby, because He knew that we could take the challenge, and maybe that's true. All I know is that this baby will be loved, Down syndrome or not, and that hopefully he'll be coming into a better world... one with no limitations on what he can accomplish.