In conjunction with National Pediatric Transplant Week , I’m sharing the story of how we found out our son would need a heart transplant.
Have you ever had a day where your world is turned upside down in an instant? Where you start the day living one life and by the end, it feels like something entirely different?
On January 7, 2020, we received news no one ever wants to receive. We hoped the appointment would end with medication at worst.
Instead, the doctor came in with a smile on his face but stress in his eyes and laid out the news, “Your son has Restrictive Cardiomyopathy. Unfortunately, there is really no treatment other than heart transplant.”
But this story starts way before that fateful day in January. It starts before Wilder was even born. You see, I also have cardiomyopathy, as did my father. I won’t derail this story with those (today), but suffice it to say, cardiomyopathy was not a new word for our family.
I had a fetal echo during pregnancy due to my health history. While this did not show cardiomyopathy, Wilder had several holes in his heart. The holes were closely monitored during his first few years of life, until we received the great news when he was three-years-old – all holes were closed!
Since cardiomyopathy does run in the family, he was to be followed every other year through his childhood, just to be sure nothing new presented itself. My daughter followed the same regimen. We’ve done the whole bi-annual check and honestly, were lulled into a false sense of security. Cardiomyopathy won’t happen to my kids.
“We See Something New”
Wilder saw the cardiology team again in November 2019. We arrived ready to blow through the normal steps – testing, all clear from the doctor, get a cookie from the hospital bakery and move on for another couple years! I even had a massage scheduled for the afternoon.
Instead, the second they placed the ultrasound wand on his chest, I knew something was wrong. I’ve seen a ridiculous number of echos in my life, but this time I could not orient myself to what I was seeing on the screen. The technician kept taking pictures. Too many pictures. She measured… and remeasured. She tried different angles, even though the pictures looked clear.
My body felt heavy.
Next we set up for his EKG. Thirteen leads retrieving the electrical impulses from his heart. It didn’t look right either.
I tried to stay upbeat chatting with Wilder while we waited for the doctor. I had a mental conversation with myself: I’m not a doctor, and I don’t actually know what I’m looking at.
But his doctor came in and told me that he has signs of cardiomyopathy. “We aren’t super concerned yet, but there are changes. We will monitor him more closely and we’ll run some genetic testing today.”
The Phone Call that Changed Things
Remember how I said I had a massage scheduled for after the appointment? Well, after receiving disappointing news, I really needed it. As soon as it finished, I pulled out my phone to discover a voicemail from his doctor needing to speak with me ASAP.
After further reviewing his testing from that morning, they were much more concerned that they were originally. His atria were both dilated, and they weren’t sure why. The next step would be a cardiac catheterization to assess the pressures in his heart.
I’m sure you’ve heard the saying “Never consult Dr. Google.” I agree with that statement wholeheartedly – but the first thing I did after the phone call ended was google “types of cardiomyopathy”. There are only five types, so it didn’t take me long to match up the description of Wilder’s heart with Restrictive Cardiomyopathy.
And I couldn’t find anything good.
First Cardiac Catheterization
Jake and I were nervous on the day of the cath. We somehow convinced Wilder that this was all very cool. He was excited to see pictures of his heart and get a cool cut on his leg!
I was familiar with cardiac catheterization, but was surprised to find he would be under anesthesia for two or three hours for this procedure.
Jake and I waited nervously but it was finally done- early too! We met with the surgeon to discuss the initial results: definitely cardiomyopathy, but not restrictive. We were elated and went to be with Wilder in recovery. And he got to meet the hospital dog, Targa!
All was well – until a week later when the nurse made a point to schedule the follow up on the first day our doctor came back from vacation.
After the nurses call we knew the news would not be good. We tried not to think about it, but deep down in my gut, I knew the answer would be that he had RCM. I also knew that would mean a heart transplant eventually.
Our doctor told us Wilder had restrictive cardiomyopathy. I think he expected us to fall apart, but we had prepared ourselves for the possibility.
However, we didn’t know that pediatric heart transplants are not done in our area. After that appointment, we had to decide what transplant center we wanted to work with, knowing that one of us would eventually move to the area while we waited.
It’s complicated trying to balance which transplant centers have the best statistics (of course we want the BEST), with ones where we have support nearby (because we’re going to need it), while remaining close enough that our family can get to us in a reasonable amount of time.
Ultimately, we decided on Texas Children’s in Houston.
This is only the beginning of our transplant journey. Some days we nearly forget about it. Other days, it’s all consuming.
If you’re a parent who’s recently received this news about your child, know that you’re not alone. If your head feels like it’s full of cotton – that’s normal. If you’re suddenly checking your child’s breathing like a newborn again – also normal.
I encourage you to find a support group, whether it is in person or online, to walk alongside you. I am involved in a couple Facebook groups that are a godsend.
And hopefully this blog and our story will help you too.