Since we knew that our baby had a 99% chance to have Down Syndrome when I was 15 weeks pregnant, we had a long time to adjust and deal with the news. I did cry the first day we found out and fretted for a couple days as I started to educate myself. The main concern I had was the health of my child, and I did everything I could possible to give him the best chance of being born healthy, which made me healthy as well. So although some would think that knowing about his diagnosis would cause a lot of distress, worry and uncertainty, I actually found that I enjoyed my pregnancy with Luke more than with my first son. In fact, my pregnancy with Luke was pleasant, despite the challenges we faced during my pregnancy and his diagnosis. I hope others have positive experiences about their prenatal diagnosis and pregnancies and choose to share their stories as well.
Knowing his diagnosis allowed us to grieve whatever expectations we had for our child as well as educate ourselves on what it would mean to have a child with Down syndrome, which I came to realize is not that different than expecting a typical child in my perspective. Then we could celebrate and prepare for his birth.
It also helped to pay a visit to Gigi’s Playhouse, where I met other moms with babies and toddlers with Down syndrome. I met and talked with other moms and their children. What I came away with most was that all of their moms adored their children and you could see their love and pride in their eyes. I noticed that these children were just like any other kids their ages, and all seemed very happy while engaged in play with others. Yes, most of these children were developmentally delayed but most would reach typical milestones, just a little longer than what is standard. Some also underwent surgeries related to their heart or digestive systems, but all were successful and their children were thriving now. So I knew that no matter what challenges would come, that we could address and deal with it as others have before us. All of this gave me hope and made me relieved that everything would work out.
Even though I had a difficult pregnancy, I enjoyed my doctors visits so that I could see my baby’s ultrasound and hear his heartbeat. I think all of those ultrasounds made me bond with my baby before he was born and I enjoyed every opportunity I could see him move his arms and legs and see his adorable profile. I recall that he would have frequent hiccups and I would caress my belly as if I could comfort him that way. I loved watching my belly shake with every hiccup, even though I had read that it may be a symptom of reflux (which he does have). But it made him seem so alive. All I wanted was for him to be happy and healthy.
So my efforts focused on having a healthy pregnancy. I already have a myriad of issues on top of being an older mom, so I was fortunate enough to have wonderful ongoing care (biweekly to bimonthly through my reproductive immunologist) and that helped put my mind and worry at ease. I focused on eating well, doing acupuncture 1-2 weekly (also helped with morning sickness), taking many vitamins and supplements (including baby aspirin, fish oil and vitamin e as part of the RI treatment to improve blood flow to the baby), and being on bed rest for the first 2 trimesters due to bleeding in the first trimester. All this helped me to feel better and feeling like I was doing everything I could to have a healthy pregnancy and baby.
There is a theory out there that some of the health related complications and some unique traits (like low set ears) with Down Syndrome are due to organs not being fully developed due to poor blood flow to the baby. I don’t know how much truth is in this theory, but I feel like the attention spent on good blood flow to the uterus during my pregnancy was helpful in ensuring that Luke would be in good health. During one of my visits, I was told that there are 2 arteries and 1 vein to carry blood to and from the uterus in typical pregnancies, but that in some pregnancies where the child has Down syndrome, there is only 1 artery to the uterus, which can cause less blood flow to the baby. In my ultrasounds (and I had a ton!), they confirmed that I had 2 arteries to the uterus. Dr. Kwak-Kim’s office also checked the rate of blood flow to the uterus and would alter treatment if the flow wasn’t enough. So I think that my treatment and care is the reason why our baby is healthy today. Given that I am a type 1 diabetic and I have Hashimoto’s thyroiditis, and Luke has had no health issues with his heart (more common in children with Down syndrome and mothers who are diabetic), digestive tract, thyroid or anything else but reflux, seems like a miracle to me.
So while I don’t think prenatal testing is for everyone, for me I’m glad I did it because it helped me adjust to the diagnosis, focus my efforts to have a healthy pregnancy and baby, all so that we could celebrate the birth of a very beautiful baby boy. I don’t think it is for everyone though, as I think many people would stress out about it. If in a difficult position regarding termination, I also urge you to take some time before making any kind of decision and to listen to your heart, and be wary of doctor’s opinions, especially if they are negative. I believe that many moms who make that difficult decision live to regret it. I wonder if any of the moms who look at Luke with sadness or are uncomfortable (I’ve witnessed it a few times), were one of those moms who made a decision they later regretted. So I just caution anyone faced with this difficult predicament, as it is not easy to forgive yourself should you have regrets and it is not a decision that can be reversed.
I wish we lived in a world where “I’m sorry” is replaced with “Congratulations!” when being told about a baby having Down Syndrome because we have found our lives so much better and enriched because of Luke, and we know of many families that share this sentiment. Maybe if that was the case, there would be less cases about aborting pregnancies that carry this diagnosis. Really the diagnosis itself is nothing to fear and Luke has been such a joy in our lives, so much so that the contrast to some people’s reactions is so stark in comparison because no one should pity us for having such a beautiful and sweet child.
Whenever I introduce him, I tell people he has Down Syndrome, is doing great and we adore him before they have a chance to express any feelings or sentiments of pity because there is no need for any. Honestly, it has worked well pretty much every time and sometimes people are sweet, some share stories of others they know, and some don’t know how to react, but I hope most walk away knowing that there are families out there that don’t feel in any way disadvantaged because they have a child with Down Syndrome. I feel that Luke will be able to accomplish whatever he sets his mind to do: whether it be to start his own business, live independently, get married, go to college – all accomplishments already achieved by many who have Down Syndrome.
So if you do get a prenatal diagnosis and decide to keep your child (which is a decision I don’t think you will ever regret), I recommend that you talk with others in local support groups, take care of yourself and your baby and do what you can so that you too can celebrate the birth of your child into this world as you have every reason to celebrate just as every other mother who has had a beautiful child.