OUR CONGENITAL HEART DEFECT JOURNEY, PART 1

Did you know that approximately 1 in 100 babies are born with a Congenital Heart Defect?
My Jack is in 1 in 100. Despite amazing advances in maternal-fetal medicine, there are still babies born everyday with undiagnosed congenital heart defects. That’s our story.

I had a relatively health pregnancy with Jack. His anatomy scan was “normal” and when I was sent to maternal-fetal medicine at the end of my pregnancy because he was “a big baby” they did another anatomy scan to check my amniotic fluid levels and everything looked normal.

Jack made his way into the world in 3 pushes on March 16, 2016. Everything seemed normal and after I was moved to a private room, they took him to the nursery until his next feeding so that I could get some rest. About 4 AM, I was woken up by a team who informed me that while Jack was in the nursery, his breathing became labored and he coded. They were able to resuscitate him and he had been moved to the NICU. He was stable and they were running tests, x-rays, etc., so I would be able to visit him after 8 AM. It turns our he had inhaled meconium during delivery and he had asperated on it. While no one wants this to happen, we are so grateful it was caught quickly and knw that once his oxygen stabilized and his chest x-ray was clear, we would be able to take him home.

Fast forward to October 2016. Jack had been considered a healthy infant, after the initial stay in NICU. In October 2016, Jack was diagnosed with his first of 4 upper respiratory infections between October 2016 and April 2017. As a first time mom, I was concerned, but the doctors kept assuring me that his immune system is developing, he probably picked them up in the nursery at church and there was nothing to worry about. The biggest concern I had, was although the normal symptoms of the upper respiratory infection would go away after a week or so, he still had wheezy breathing for weeks at a time afterwards. The colder it got, the worst the wheezing was.

Around May 2017 I noticed that the wheezy breathing had been gone for a few weeks and didn’t think much more about it. We spent the warm summer days outside playing, soaking up every bit of sun that we could and everything seemed back to normal.

In September, he started a Mom’s Morning Out programs a few days a week, so I wasn’t super surprised when he got his first “cold” a few weeks later. However, when the wheezy breathing didn’t go away for several weeks, I decided to take him in to our new pediatrician. His initial thought was that Jack might be developing asthma, but informed me that it’s difficult to diagnose that at his age and we should continue to watch it. He prescribed an inhaler to be used as needed.

Over the next few months, we experienced the same cycle that we had experienced the previous year. Jack would be diagnosed with an “upper respiratory infection,” he would continue to experience the heavy wheezy breathing for weeks after and the colder the air got, the worst the wheezing was.

Once Jack turned 2, in March 2018, our pediatrician sent us to the pulmonology clinic. The pulmonology clinic echoed what our pediatrician said, that it seemed like Jack was developing asthma.

Towards the end of April 2018, I remember thinking, “WOW! His breathing is so much better,” and through the warm summer months, he had little to no asthma symptoms, but as you can probably guess, around the first big cold snap in October, the wheezy breathing was back. This time, he had no “sick” symptoms. No runny nose, no fever, no cough. Just the deep wheezy breathing and it continued for MONTHS.

This was when the “Mom-Radar” started not just sounding, but BLARING. I knew deep in my gut, that something was not right. We continued to use the inhaler, took steamy showers, used a humidifier while he slept, but nothing cleared it up. When I took him in for his 3 year check in March 2019, our pediatrician decided that it was time take some next steps and referred us to the Pulmonology Clinic at the Children’s Hospital in Denver.

By the time our referral had been processed and the appointment had been set, it was towards the end of April. The breathing had cleared up, he was experiencing very little to no wheezy breathing anymore, but I decided to go ahead and keep the appointment. At least we would be established there should we need to come back in the future.

They also did allergy testing on him and tried a few breathing tests, but they were very inconclusive because of his age. Their recommendation was to continue use of the inhaler as needed and follow up in October, when we usually would begin to see these symptoms, but until then, enjoy our summer.

This wasn’t exactly what I wanted to hear, but based on the past few years, I knew that summer was his time to thrive, so we waited it out.

I’ll be sharing Part 2 of Our CHD Journey on Tuesday!