Let's talk about one of the most common health conditions associated with DS: heart defects.
According to the National Down Syndrome Society (ndss.org), about half of all people with DS have some sort of congenital heart defect. Some sources reported a higher number, even up to 65%.
When Eliyanah failed her newborn heart screening, this was our first indicator that our hunch about her having DS was correct. I remember the terrified and helpless feeling of not knowing if she would be ok. Would she survive? Would she need open heart surgery? Would she be on medication throughout her life? The questions just ran over and over in my mind. I have a photo that I am not yet ready to share with the world, of me with tiny Ely, tucked into my shirt, trying to get some skin on skin to help her regulate her body temperature, breathing, and heart rate while we waited to take her to the doctor. In the picture, I was a mess of tears. I did not know or understand what God was doing.
In that moment, someone knocked at our door to tell us a package had arrived on their doorstep by mistake. It was a rocking chair for Eliyanah. Someone had anonymously sent it to us (I still don't know who it was!) When the box was brought in, I looked at it and wondered if I would even get to use it. I must have voiced some of my fears outloud, because I remember Chloe saying, "Mom! The brand of the chair has the word 'angel' in it. It was sent by an angel to let us know that Ely is going to be ok!" Oh, the wisdom of my sweet girl. The beauty of her faith in that moment still brings tears to my eyes.
When we arrived at the doctor's office, I remember feeling like my mind was disconnected from my body. Part of me wanted to rescue her from all the poking and prodding, and the other part of me wanted to run away and hide from the reality of what we could be facing. What stood out to me is that they did not seem overly concerned about her. This was baffling to me. How could they be cracking jokes and acting like this is just another day? Couldn't they see that this was one of the worst days of my life?
The doctor ordered the ECG for the next day. One more day of not being sure what we were dealing with, but at least we could wait it out at home. I will never forget sitting there in a dark ultrasound room, holding my brand new baby while she slept and the technician scanned her heart for over an hour. I could not help but reflect on the irony of how joyful my other ultrasound experiences have been. And here I sat, trying to make sense of the images of her heart on the tiny screen next to me.
At some point, I accepted that she might need to have surgery. But looking at how fragile she seemed, with my maternal instincts in full gear, with adrenaline as the only energy I had to even be out of bed 3 days postpartum, I just prayed and prayed for her to be ok. For the strength to face whatever we needed to face. To be able to accept what He was calling us to.
A couple of days later, we got the ECG results. I could not make sense of the diagnosis. Without hesitation, I sent the results to a dear friend who understands how to read these reports. She immediately responded, "This is great news!" She went on to explain that Eliyanah had the two most common holes in her heart, that can happen to any typical child and almost always close on their own or remain open and asymptomatic. I couldn't believe my ears. Her heart was going to be ok? She might not need medical intervention? I still didn't know what this meant for her future, or if her heart would fully heal, but what I did know in that moment was the sweet feeling of relief. Of finally letting myself breathe just a little. Right after this, I got a call from Derrick. He had taken the kids to grocery shop and was now sitting on the side of the road with a flat tire. My response? Laughter. 😅 There was a time in my life where these things would cause frustration and stress. Now it just seemed so ridiculous to ever be sad again about a minor inconvenience.
In October of last year, when she was 5 months old, we were given the joyous news by a pediatric cardiologist that Eliyanah's heart was, in his words, "Normal". In fact, he also added, "Don't come back!" And we have gladly complied with that order. He explained that of the two holes, one had completely closed. And the other, while still open, was asymptomatic and common for even a typical person. He also looked me in the eyes and said with sincerity, "You DO realize how unlikely it is for a child with DS to have nothing wrong with their heart, right?" To which I tearfully nodded. I sure did know. He continued, "You have been blessed! And there are so many resources and opportunities for her to have success. Children with DS are able to be very much like their peers in many ways."
We walked out of that doctor's appointment beaming with joy. Praising our God all the way. Eliyanah's heart was healthy. Hallelujah!
