Before Kaylen, my husband Darrin and I were happy to be average—to not stick out in a good or bad way. Darrin worked as a mental health clinician in a prison; I had quit teaching after our second child and was running an in-home daycare. Our two sons were school age, our daughter was still home with me, and we had just started considering a fourth child when I took a positive pregnancy test.
I was 35 and had two prior miscarriages, so my doctor considered mine a higher risk pregnancy. During the first ultrasound my daughter was amazingly active and I thought “Whoa—something is different with this kiddo.” I loved the chances to see her on ultrasound and hear her heartbeat, and she grew and measured as expected. Everything was proceeding in the average way we were comfortable with.
Since I was now of “advanced maternal age,” in the second trimester the doctor recommended a triple screen blood test. I felt that any additional information was helpful, so I agreed. Not long after, I received an almost tearful phone call from a nurse who said “I’m so sorry to have to tell you this, but your blood test shows elevated risk. We’re sending you to a perinatologist for more information.” She apologized repeatedly and sounded so upset that I ended up reassuring her that it would be okay. Some quick internet searches told me that false positive results for the triple screen were relatively high. In fact I had two friends who had received positive results only for their babies to be born without issues. They reassured me that it would all be fine and suggested I just enjoy a 4D ultrasound.
I went into the office of the perinatologist (I will call him Dr. X) fully prepared to receive good news and leave with some great pictures. I enjoyed the 4D ultrasound—I got to relax in a darkened room and see my baby in more detail. The technician measured body parts while answering all my questions about what she was doing. When she finished, she went to get Dr. X. He entered the room, and I knew something was wrong as soon as he started with “Unfortunately…”
They found that she had some “soft markers” for Down syndrome, such as shortened long bones and fluid in a certain part of her brain. I still wasn’t clear on the odds; I thought she had perhaps a 1 in 300 chance of having Ds, but Dr. X said it was more like 1 in 4. That was when I knew our life would be different. She might not even survive to birth, and if she did, my husband and I would join the alien group of “parents of children with disabilities.” The doctor gave me a long list of negative health conditions involved with Down syndrome and emphasized that carrying a baby with Ds increased my risk of miscarriage. He emphasized it shouldn’t be hard for me to get immediately pregnant after an abortion if I wanted to “try again for a normal baby.”
I hate uncertainty, so I asked about getting an amnio to find out for sure. Dr. X said there were three reasons people had amnios: if they (1) were considering terminating (I shook my head and said “We’re not going to do that”), (2) would be too stressed out by the uncertainty (“Yup, that’s me”), or (3) would change medical and birth plans based on the information, for example switching hospitals or doctors (“Yup, me again.”). He discussed the risks, including the risk of miscarriage, but also said he had never had a patient miscarry because of an amnio, and he had done thousands of them. I said “Well, this is still my first.” Still he said he could do it during that same visit, so I began filling out the paperwork. He emphasized that if I did decide to terminate, we’d need to find out quickly because I was nearing the cutoff date. I told him flatly that there was no way we were going to kill our child. He performed the amnio and said they had to mail the sample to the lab and we should have the results in about a week.
I rushed from the building to my car and burst into sobs. I felt as if everything comfortable and sure in my life was gone. My joy in carrying my baby was now replaced with stress and worry. I was angry at myself for needing the reassurance of the amnio, but I also had the grieving thought “Well maybe if she does have Ds and I miscarry, that would be sad but okay,” followed by the question “What if she doesn’t have Ds and I cause her to miscarry because I wanted to know for sure?” I was sickened and ashamed that I would even think that way, as if somehow her life was worth more if she had the typical number of chromosomes and less if she had one extra.
Eventually I was able to stop crying long enough to call Darrin, but when he answered I couldn’t even speak. I burst into tears again. He said “Oh wow. It didn’t go well.” I gulped “I think she has it. I did the amnio.” He said “She? It’s a girl?” I only then realized the doctor had referred to our baby as “her” when we hadn’t yet known the gender. I had been too preoccupied with thoughts of how our life was going to change in so many unknown ways. I asked Darrin “What are we going to do?” and he calmly answered, “Well, we’re going to love our daughter.” And suddenly I didn’t feel so alone in our new reality.
I collected myself and drove to a friend’s house. I told her about the testing and the amnio and she said “I trust a mom’s intuition about these things. Do you think she has it?” I admitted that I thought so. Somehow, admitting it to someone other than my husband gave me peace. She hugged me. We moved on to conversation about childhood memories and had a wonderful visit. Being able to mix conversations about my disabled child with “every day” topics was just what I needed—it was the beginning of adjusting to my new normal.
Over the next few days, Darrin and I researched Down syndrome as we prepared for how our lives might change. We picked out her name and kept our new secret from the world. Two days after the amnio, Dr. X called with the results. He again began the conversation with “unfortunately,” but actually finding out for sure that our daughter had Down syndrome made me smile. Now we had information and could move forward. Dr. X reiterated that if we wanted to terminate, we had to get scheduled quickly. I told him to stop mentioning abortion because we weren’t going to kill our child, and he responded that he just wanted to make sure that we knew all of our options.
My next perinatologist appointment was for a fetal echocardiogram to see if our daughter was in the 50% of children with Ds who need heart surgery. I was excited again, though with more caution. The technician did her work, but this time when the perinatologist entered, it was a different man (I will call him Dr. Y). As soon as Dr. Y walked in he congratulated me on my daughter. His response was a beautiful reminder that I was carrying a little person and not just a list of medical problems. He said that he had a sister with Ds and that raising a child with Ds would be more similar than different from raising our other children. He made sure we had a good support system and plenty of resources, and he invited us to an upcoming Walk for Ds fundraiser.
Dr. Y showed me the same list of medical issues that Dr. X had emphasized, but this time Dr. Y also pointed out that people with Ds don’t end up with all of these issues; some have just a few and some have more. He suggested we try not to focus on the negatives, pointing out that even ‘typical’ children have medical issues and parents just deal with them as they come up. He said those challenges do not define the child, and each person with Ds is an individual with his or her own talents, skills, and interests. Dr. Y’s support and encouragement made all the difference. He made us feel as if we had been accepted into an elite group: the group of people who know and love someone with Down syndrome.
We told our immediate family of Kaylen’s diagnosis but waited a bit to make a public announcement. Some family members prayed that Kaylen would be healed of her bonus chromosome before she was born. I believe that they were trying to be supportive and helpful, and that there response came from lack of experience with Ds and a desire to spare us from extra challenges that her diagnosis would bring. We told them we were okay with her having Ds, and asked them to change their prayers.
The rest of the pregnancy involved some poignant and pointed moments mixed in with everyday life. An online friend who had recently had a daughter with Ds signed me up for a statewide Ds group that sent a large box of information, resources, and books. I dug through it feeling thankful for all the resources, and then happy cried when I found an adorable little pink dress at the bottom. It was nice to have others acknowledge the ‘sweet little baby girl’ part of the pregnancy. At one point I sat in the doctor’s waiting room while another pregnant mama loudly spoke on the phone, telling someone how hugely relieved she was to have “passed” the test and learned her baby didn’t have Down syndrome. From time to time people would ask if we were going to find out the gender or didn’t have a preference “as long as it’s healthy.” How do I answer when I know most people wouldn’t consider my baby “healthy”?
It took us some time to decide how to announce Kaylen’s diagnosis—we didn’t want it to be her defining characteristic but also didn’t want to suggest we were hiding or ashamed of it. We announced on social media that our daughter would be born with an extra chromosome. There were a few “I’m so sorry” comments but overall the support and congratulations were encouraging.
I found a lot of support. I learned of old friends who also had children with disabilities, and our pediatrician connected me with two local moms of children with Ds. We also joined statewide and national Ds groups to hear perspectives from people with experience. And through online parent support groups, I connected with new friends from around the world who were in the same situation I was. To my surprise, the majority of comments in these groups were celebrating successes and offering support and encouragement. Most of these moms considered themselves part of “the lucky few,” and the most frequent challenge seemed to be trying to get society to value people with differences, especially those with visible cognitive disabilities.
My pregnancy continued with increased monitoring. We switched to a hospital that had an OB/GYN who specialized in high-risk pregnancies and a NICU so we wouldn’t be separated if Kaylen needed extra help after she was born. The OB/GYN was scheduled for vacation on Kaylen’s due date, so we scheduled an induction the day before. The drive to the hospital felt like a sweet farewell to our life’s familiarity and a journey into the unknown, but it wasn’t so scary as long as we were together.
I had read that babies with Ds sometimes have trouble nursing, so I chose not to have an epidural which might make her more sleepy and less likely to latch. I was induced and Kaylen was born 3 hours later. While they were cleaning her up and giving her oxygen, the nurses sang her “Happy Birthday” and my heart nearly burst with joy.
The next few years were more ‘typical’ than we originally expected. There were more medical appointments that first year, but we took each one as they came and learned as we went. One difference between raising Kaylen versus our other children was how we celebrated more of the little things. Milestones and accomplishments were HUGE because of all the step-by-step work it took to reach them. We also felt more relaxed and free to not keep up with anyone else. Of course, there were and still are some twinges of grief when we see a gap between where her peers’ development and her own. We try to embrace the idea that “comparison is the thief of joy,” but there are still moments of grief over the loss of the way that we thought life would be and over moments when people see her only for her disability, instead of getting to know her as a unique person.
Still, overall the gap between Dr. X’s grim outlook and our joyful experiences inspired us to support other people in our situation. We decided to get our foster care license specifically to accept children with Ds. We were told it was highly unlikely a child with Ds would come into our foster care region, so we also got a private adoption home study and we registered with NDSAN (National Down Syndrome Adoption Network). NDSAN counsels families who receive a prenatal Ds diagnosis; it also matches families who want to adopt a child with Ds to such children available for adoption. NDSAN’s goal is to ensure every child born with Down syndrome has the opportunity to grow up in a loving family. We waded through paperwork and training and then waited… and waited. After about a year we began considering looking for another way to help, but then the phone rang and NSDAN appeared on our caller ID.
I felt like I had stopped breathing. I answered, and the voice on the other end said, “It’s a girl!” We had been matched with a baby girl to be born the following month in a neighboring state. We waited in nervous anticipation until we got the call asking if we could pick up our daughter.
When Lilly was placed in my arms, I wasn’t prepared for my reaction. I felt the same amazing love for her that I felt at the birth of our biological children, but I simultaneously felt heartbreak and overwhelming loss for Lilly’s birth mom. She chose a family she felt could better navigate caring for a child with Down syndrome; the magnitude of her love for her child still brings me to tears. We have since learned that adoption is not simply placing a child with parents, but actually melding two families. We feel as though we also adopted Lilly’s first parents. They love her fiercely, and we keep connected through email and social media.
I wholeheartedly believe our family is better and stronger for having children with disabilities. Most days are just a beautiful normal, and I feel as if I’ve stepped out of the ‘rat race’ onto a more peaceful, leisurely path that is filled with all kinds of beauty. It’s as if I never realized I was colorblind until I put on glasses that showed me color. Also my priorities have changed. Conflict was always uncomfortable for me, but having children with disabilities has brought my ‘Mama Bear’ much closer to the surface; I’m now quite comfortable standing up and advocating for my children. Growing up, I had never been around many people with disabilities, so I didn’t know how to act or what to say, but I am learning.
Parenting Kaylen and Lilly has mostly been like raising our other children. Lilly loves books, playing outside, dancing and singing, and playing with friends. Kaylen is now fully included in her 3rd grade classroom. She thinks Lilly is annoying when she makes loud noises and likes it when her older siblings play games with her. There is a stereotype that people with Ds are happy all the time, but the reality is that they experience a full range of emotions, like all of us. Kaylen and Lilly do seem a bit more honest and without pretense.
Parenting our ‘typical’ children alongside Kaylen and Lilly has had good effects too. I believe they are more likely to include people of all kinds because of their siblings. In fact researchers Richard Urbano and Robert Hodapp found that parents of children with Ds are more likely to stay together and medical geneticist Dr. Brian Skotko found that siblings find rich value in having a family member with Ds and nearly 99% of people with Down syndrome are happy with their lives. All of this data beg the question: why does society (and the medical community) encourage abortion in cases like Kaylen’s and Lilly’s?
What are your thoughts on prenatal testing for Down syndrome?
There’s no one right answer. For me, prenatal testing was a tool to help me prepare and reduce the stress of the unknown. For a good friend of mine, the test results weren’t going to change anything for her, so she declined and got her daughter’s diagnosis at birth. I’m glad to note that prenatal testing is improving. Right after Kaylen was born, researchers developed a less-invasive blood test with very high accuracy and no risk of miscarriage. I don’t think prenatal testing is inherently a problem; the issue is how society uses the test results and doesn’t protect and value life.
What would you say to a parent who just received a Down syndrome diagnosis?
When I got our diagnosis, I immediately felt unqualified and feared I would be a bad parent. That’s not an unusual response. Find support teams—both online and in-person, if possible—to ask questions, vent to, and celebrate with. Know you don’t have to be a super-advocate. Your life can just continue on in the regular, everyday way it does now. There are days when we don’t even think about Down syndrome. You’ll learn to parent as you go, just like parents do with any other child.
I would want to invite them over for coffee and to meet our girls. I would encourage them to first learn about Ds and make sure they don’t have an ill-fitting stereotype in mind (as most people do). And then if they still believe that they’re not ready to parent a child with Ds, I would steer them towards NDSAN and encourage them to find a family for their baby.
Additionally, medical professionals need updated information on Ds and training on how to provide a diagnosis. It would be great if the person giving the diagnosis also had some awareness of what life as a person with Ds is actually like. I believe if expectant moms were given updated, encouraging information instead of doom and gloom, it would make a huge difference.