Becoming a Mom of a Child With a Critical Medical Issue
My third son, Ian, was born in the month of February, and all was wonderful. He was as healthy as my two other sons when they were born, including a short bout with jaundice. I assumed that he would be just as healthy as his brothers. I did worry that he was breathing a little fast, but a nurse brushed that off when I mentioned it. Turns out, I was right to be concerned about that.
At a month old, I was taking pictures, and I noticed that he had a weird look of worry. I didn’t know that a one-month-old could look worried, but he definitely did. A spring blizzard had hit that day, and he started to become congested. We were snowed in for a few days, and he got progressively worse. On the 4th day, we were able to dig out enough to get to the local hospital, where they admitted him. The next morning, a specialized cardiologist was called in because you could actually see his heart beating while looking at his chest, which is not normal and was not occurring before the illness. The cardiologist, Mike, did a scan and saw that Ian had a heart defect, a Ventricular Septal Defect or a large hole in between the two lower chambers of his heart. It would require open-heart surgery to repair, but they would wait 6 weeks to give him time to get over the respiratory illness. It was supposed to be a single surgery that would repair his heart for life. I was devastated, but things were about to become much, much worse.
Ian was squirming during that first scan, so it was difficult for Mike to see the whole picture. He clearly had a feeling that he had missed something because he showed up over the next two days to check on Son3.
The local hospital was getting ready to discharge Ian as they felt his respiratory illness was getting better, but I saw that it wasn’t better, he had a strange cough that had started up, and he was nursing a great deal less. Mike showed up in the morning and decided to do another scan because Ian was sleeping this time. What he saw was much more than a ventricular Septal Defect, and he made immediate arrangements for Ian to be transferred to Denver Children’s Hospital.
It was there that we learned the full extent of his heart defect.
Ian was born with a very rare heart defect called Truncus Arteriosus. This means that he did not have a separate pulmonary artery and aorta, but that they were one single artery that fed both his lungs as well as the rest of his body. The hole between the lower ventricles pumped into this one vessel. It is not a heart defect that a person can survive with for more than a few weeks or months, usually. It is also extremely rare. Truncus happens less than 1% of the time in a child with a heart defect. To repair it, they would need to make the one vessel he grew into his aorta and create a pulmonary artery for him from a donor pulmonary artery. It is a very complex repair, and only a highly skilled surgeon can accomplish it. They had actually stopped doing Truncus repairs at Denver Children’s Hospital for at least seven years because none of the children were surviving the initial surgery. The surgeons at the time were good, but not enough to have success with Truncus. As fate would have it, Denver had just hired a Pediatric Cardiothoracic Surgeon from Europe who had the skill to repair Son3’s heart.
They needed to do open-heart surgery on him as soon as he was well enough. They scheduled the surgery a few days after we arrived at Denver Children’s, but then he tested positive for RSV, and they had to push the surgery out further because that made his odds of surviving surgery much, much lower.
The RSV was a mixed blessing. It had made his heart defect become evident, but it was also something that was killing him. It was a dangerous two-week waiting game, and Son3 was deteriorating during this wait. His heart was at first racing, and he was breathing over 100 breaths per minute. He was not sleeping, but was just breathing. His eyes began to go in two different directions. They intubated him to actually give him some carbon dioxide because his blood was over-oxygenated due to the mix of blood from his lower ventricles. This gave his system a little more balance, and he was able to rest some. The day before his surgery, his heart began to have decelerations, slowing down to the point that they needed to help him get his heart rate back up. His heart was failing him, and the wait looked like it might be too long.
There is little in life that is worse than watching your child be wheeled off to surgery. I didn’t know what the outcome would be, and if this were the last time I would see him.
It turned out that the wait was one that he actually lost, but at the right time. Just as they opened up his chest to figure out how to approach the repair, his heart stopped. He died in that moment. Fortunately, they were able to use internal paddles to restart his heart. From there, they started the process of putting him on the heart-lung bypass to repair his heart successfully. On the day he turned 6 weeks old, he got his second chance at life.
He was in the hospital for a month, and we came home to a whole new reality. I now had an infant who had to heal from an open heart surgery. He would also need additional surgeries throughout his life. He was never going to be fully “cured”.
Over the years, I had to figure out how to help him as he healed from surgeries and procedures, but more importantly, how to help him understand his heart defect and how to help him emotionally with the reality of his heart and his health. How were we going to get through an hour-long echocardiogram as a squirmy two-year-old? How was he going to feel about the scars on his body as a self-conscious middle school student? How was I going to answer all of his questions about what happened at each stage as his understanding grew over time? How was I going to help him transition to taking care of his own heart health and issues as he moved into adulthood?
There was so much I didn’t know at each phase of this, and really, I just followed my heart (yes, pun intended!) and tried to help him the best I could with each phase. I did the best I could, trying to help him from the perspective of what he might be feeling and going through. I leaned into empathy and tried to see things from his perspective.
As you may have guessed at this point, Ian is now an adult and is thriving. We have gone through all of the phases of growing up with a heart defect, and he is now 23 and taking responsibility for his own care. He will always have surgeries ahead of him. As I write this, he is showing signs that he may need another open heart surgery in the next year or two. It will be his third. It is a fact of his particular heart defect, but otherwise, his longevity is anticipated to be normal.
I plan to write more blog posts about ways to help a child through medical challenges. I want to share some of the things that have been particularly helpful, as well as the things I could have done better. This post is only the start, the “origin story” if you will.
Peace to all of you facing medical challenges of your own, your children, or your students!
