I Have a Newborn With Down Syndrome—Here’s What the Gerber Baby News Means to Me
My husband Oliver and I had been trying for quite a while to get pregnant, so when we did, we decided around 11 weeks to opt into a noninvasive prenatal test in order to find out the gender. Or so we thought. The following week, the results came back positive for trisomy 21, the most common type of Down Syndrome. Because that was just a screening test, we went through the diagnostic process, and around 12 or 13 weeks, we finally had the confirmed diagnosis. We both cried.
Throughout the weeks and months that followed, as we tried to process the diagnosis, we were on a fact-finding mission, in search, mainly, for what the potential quality of life would be for our child. We read about every possible challenge: 50 percent of babies born with the extra copy of chromosome 21 have a heart defect that needs to be operated on within the first year of life; problems with vision, hearing, and the thyroid could arise. And, while the one in 691 children born with Down Syndrome in the United States each year face different challenges, both mild and severe, the hard fact of the matter is, a majority of pregnancies that are identified prenatally with trisomy 21 are ultimately terminated. At the time, it was really hard to process, and I felt separated from the pregnancy for a while. We were reading scary thing after scary thing, and it wasn’t until we participated in the First Call Program in Massachusetts, where we spoke to other parents with kids with the condition, that we came to the conclusion that above all, the potential for a high quality of life and fulfillment and happiness was the same for any other child. I think that’s when Oliver turned to me and said, “I know it’s weird, but I feel like we were meant to have this child. And I believe we can provide for her.”
We turned the corner together, and at 20 weeks, we found out the gender: a girl. We named her Tenley, a name many people associate with Tenley Albright, a formidable woman, Olympian, and surgeon. Tenley was due on May 3, 2017, surreally my uncle’s birthday. He had trisomy 21, too, and grew up in the ’40s, when it was rare to raise a child with Down Syndrome in the home, and lived a very full life until the age of 65. But, Tenley came three weeks early, on April 16, the day before Oliver was supposed to run the Boston Marathon. She was born around 1:00 p.m. in the afternoon, and we slept in the hospital together and the next morning, Oliver went to the starting line and ran with her name printed on his arm. He made a personal record of three hours and 18 minutes, and after, ran directly back to the hospital. People were yelling her name and she was less than 24 hours old.
Now, Tenley is 9-and-a-half months old and while she has a number of challenges as a result of trisomy 21—she has some respiratory issues, and was on oxygen until she was six weeks old because her lungs didn’t shed their immature cells quickly enough; as well as hypothyroidism, which is very common in children with Down Syndrome—she is so happy. There is a stereotype that people with Down Syndrome are always happy, and it’s one that, for me, is hard to dispute. In fact, people always ask me if I only take pictures of her when she’s smiling, but the truth is, no, she’s actually just always smiling. My dad, whose brother had Down Syndrome, believes that once there is more research done around the disorder, scientists will find that it negates whatever gene causes judgment. There is no science behind it, but, anecdotally, it’s absolutely true: Tenley loves everyone.
People are always saying, “Oh, Tenley is no different than anyone else,” but I like to say, “But she actually is different. She’s not your typical baby: She goes down at 7:30 p.m., she sleeps through the night, she’s always happy. . . .” We’re very lucky and proud. In fact, I like to announce almost immediately when introducing Tenley that she has Down Syndrome. I don’t like feeling like people are guessing, “Does she?” or “Doesn’t she?” Sometimes, people will say, “I can’t even tell!” And even though I know they don’t mean to be offensive, the truth is, I’m proud of her cute little nose and her almond-shaped eyes and her rosy red cheeks.
seeing her condition celebrated on national television last night, with Gerber’s announcement that, after more than 140,000 submissions, they’ve named their first Gerber baby with Down Syndrome, 1-year-old Lucas Warren, the feeling was truly inexplicable. Tenley was already asleep when we sat down to the watch the Nightly News With Lester Holt. I remember Oliver pausing the preview and saying, “Oh man, this is going to be a tearjerker,” and sure enough, we both cried. Later, we watched the full segment from the Today show because we just wanted to see more.
We recognized so much of Tenley in Lucas, and not just in the common features we love so much. He was practicing waving, and that’s something we are working on with Tenley, along with getting on all fours, something she is having trouble with due to her slightly low muscle tone. The news made me remember when I was pregnant, and, it’s so silly, but in this world where everyone’s lives are on display with social media, one of the things that crossed my mind was: When I post a photo of her, what will people’s comments be? You know, a common comment that you see when somebody posts a photo of their baby is “Oh, he or she is perfect.” I wondered whether someone would ever comment on a photo of my baby like that. Getting that affirmation last night, from a company like Gerber who is associated with the quintessential idea of the “perfect baby,” and then discovering that baby has Down Syndrome, it brought back all those emotions for me. Both of our families texted us, with a ton of positive emojis, asking if we had seen the news. Oliver’s mom said, “Tenley is Miss World in our eyes.”
I think it goes without saying that all people think their children are beautiful; and we absolutely think Tenley is beautiful, inside and out. Despite all the worries we have about her adolescence and adulthood, we know she will have an incredibly fulfilling life. But I think, for all kids, it’s important to see yourself in the world around you, so you can dream about what you want to be when you grow up. And now, Tenley will.