The first thing you hear about when you receive a Down syndrome diagnosis or do any research into it usually has to do with heart problems and concerns. In fact, according to the National Down Syndrome Society, “People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.”
We received Zach’s DS diagnosis post-natally (after he was born) and we actually couldn’t even get released from our hospital until we had an appointment with a pediatric cardiologist. That doctor’s office was our first stop after leaving the hospital with our newborn son. Talk about frightening.
Neither Scott nor I knew anything about Down syndrome or heart defects and so we were completely overwhelmed.
Since those first few scary weeks, I’ve learned that we really lucked out in this area. A lot of our friends with children with Down syndrome have dealt with MAJOR heart defects, surgeries and scary diagnoses. Zach had two very small holes in his heart (an ASD and a VSD if that means anything to you) that really weren’t affecting anything seriously at the time. One of them actually closed up on its own when Z-Man was about 18 months old (hooray!). The other one was staying at the same size and being monitored first every six months and then every year and most recently we had graduated to every two years.
(Fun fact: Scott and I spent our first wedding anniversary and four anniversaries after that in the pediatric cardiologist’s office).
This past September when we took Zach to his first visit at a Maryland pediatric cardiologist for his biannual appointment, we were half-expecting that small remaining hole in his heart to be enough of a problem that we would need to have it closed up in a minor procedure.
But guess what?
The incredibly-talented, knowledgeable and caring Dr. Kirby of Frederick Child Cardiology Associates, glanced at Zach during the tests, glanced at the screen, looked over at me and smiles. “We might have to check his belly for some donut holes,” he said, cracking himself up. “Those will be the only holes we see in him today.”
The punchline behind that joke? That our little man had NO visible holes in his heart and, even more incredible, was cleared from cardiology care. FOREVER. Our little guy, the doctor said, had a healthier heart than probably the doctor of myself.
If you could only feel the surge of gratitude in my heart (no pun intended) in that moment… I mean, my earliest memories with my son are him on a huge table, hooked up to wires, covered in ultrasound goo, crying hysterically while a man I had never known before talked to me about scientific terms I still do not understand.
I talk all the time about how I want to go back to that mom of 9 years ago and hold her tight and just whisper “Wait ‘til you see how it all turns out. It’s going to be OK.”
This is one of those moments.
Grateful for a healthy and a happy heart.
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