As I look over at Harry today, his scar peeking out from his shirt, I am reminded of last June, 2024. We are so thankful to God, family and friends, and the incredible medical team. Here is our story:

No amount of time can prepare you for taking your child for open heart surgery. The night before surgery I slept in his room but didn’t sleep much. Four AM came around and I knew I couldn’t nurse him because we had to get to the hospital and prepare for surgery, which included fasting. I held him and rocked him with the biggest fear inside me, distracted some by his scent and snuggles.

We arrived at the hospital and even the kindest staff wouldn’t ease my nerves. So many emotions were running through me. But, I also felt surrounded by prayers. Prayers for Harry, for his surgeons and nurses, and prayers for me and Dan. One prayer that really carried me through was a friend prayed that God would surpass our expectations, and HE DID!

We got to Harry’s pre-op room and you never get use to the nurses sticking your baby looking for a vein. I had never experienced anything quite like this with the other kids. Just vaccines (which made me cry). If I am remembering correctly, it seemed like it was about an hour or so before they were ready to take him back to surgery. He got a tiny little hospital gown and was innocently looking at me without a clue of what was going to happen. It broke my heart and still does when I think about it. 

The nurse coordinator walked us down the hall as we carried Harry. I never would wish this feeling on anyone. The nurse assured us our baby boy would be okay, when we all know anything can happen back there and as a parent you know it’s best for your child. Even when you trust your doctors and surgeons, there is alot of faith. The moment we handed our baby over was the worst part. We watched him until we couldn’t see him anymore. Many times people have said to us, “I don’t know how you do it.” But when your baby is born with a heart defect, you don’t really have a choice. I would always choose Harry. There is no other choice.

I keep coming back to writing this story. I have sat and wrote this from my heart multiple days. My memory is a little foggy of the details and timing, probably as a way to cope and as anyone would expect. What I do remember is the pain and anxiety in waiting. We were told it would be about 6 hours from start to finish. Each time my phone would ring with an update, my heart skipped a beat. We were told when he went on bypass (the machine that keeps him alive while they work on his heart, pumping his blood). Then we were updated every several hours. Some time had gone by and we hadn’t heard anything. Turns out, they had him on bypass again, which they told us was standard to be on bypass several times to make sure his heart was working properly before they closed him up. I am so thankful for the thoroughness of the doctors in that room. 

I will never forget the chairs we sat in. The window we peered out. The cafe where me and Dan tried to pass the time. We tried to make small talk and not cry. The entire day was surreal and this was just the beginning. Getting through the surgery was the first hard part. Picturing your baby with their chest cut open is probably the hardest thing I have ever been through. We were sitting there picturing in our head what was happening back there. How terrifying it all is, but also how grateful we are to have surgeons and doctors that are able to fix him. When I was pregnant and preparing after his diagnosis, I read a book about the history of heart conditions and the way doctors, mothers, and the medical community came together to make his surgery possible today. There were so many women doctors and surgeons responsible for what we know today too! So many children passed away before him with heart defects. May we never forget the history of medicine that allows us to not only survive, but thrive today.

Dinner time came around and we still were waiting for the final update on Harry that his surgery was complete. On our way back from grabbing food, they called us and informed us that he was in recovery and we would be able to come see him. It was the best news that day and a weight was lifted. We met with one of the surgeons in the Ronald McDonald room and he filled us in on how Harry’s surgery went. They ended up putting him on bypass 3 times. So basically, they stopped and started his heart that many times. It still gives me chills. God is so good. He was diagnosed with Tetralogy of Fallot and so the repair was to fix the VSD (hole between the bottom chambers), resect some bundled muscle fibers, and try and save the pulmonary valve. While they were in surgery, they fixed the VSD but then something still wasn’t right. Turns out, “by a miracle,” they found an additional hole, called an unroofed coronary sinus. This was never seen on someone with his anatomy so they didn’t even think to look for it at first. His cardiologist even mentioned the idea of writing a peer reviewed journal article about their findings to help other children with his condition. 

But this has been the story of Harry. He is rare, nobody is like him! God worked his miracles with Harry and guided the surgeon’s hands and hearts that day. We will forever be grateful for modern medicine and doctors who truly treat these children as their own. If Harry was put on this earth to show God’s glory, he absolutely did that day and continues to. His older brother and sister also know the goodness of the Lord thanks to Harry’s bravery.

The first night we spent with Harry was tough. I couldn’t count the number of machines and medicines hooked to him. My eyes filled with emotion and my heart was so grateful, but also broken. Seeing your child’s chest cut open and on breathing support leaves you speechless. The grace and patience the nurses showed that day will always stay with us. They are heroes just as much as the doctors. They took his little footprints and the date and made him a little card to hang up for his heartiversary: something we will celebrate every year!

They explained to us that his recovery would be longer than average due to the extra time and complications of the procedure. He showed our family how brave any of us could be.

Recovery was hard. Day by day we watched Harry go through different phases; pain, fussiness, and delusion to name a few. It was a slow recovery as he struggled to get back to nursing and there were moments they had to dial things back for him. His stats would go up and down and they continued to make adjustments to everything. All his updated scans showed the surgery was successful, but the right side of his heart was still so tense from all the extra work it had been doing while compensating for the hole. He transitioned through a lot of different medications the next few weeks. We spent a total of 15 days in the Pediatric Cardiac Intensive Care Unit (PCICU). Each day, Harry improved but it was slow. He was only 7 months old during this surgery and it amazes me when I think about all he has gone through. I don’t think that feeling will ever go away. Dan and I rotated sleeping in the hospital and being home with the big kids. I pumped around the clock to keep my supply up. It was a long few weeks. The doctors were thinking of even sending him home with a feeding tube because he wasn’t eating enough after the two weeks in the hospital, but all his other vitals and numbers were improved. My mama gut told me that he just needed to be home and comfortable. The nurses listened to me and we were released with weight checks that week. 

The support of family and friends was something I will never forget or take for granted. During this time, we texted with our family and friends and maybe they thought they were just texting us, but they also carried the burden and we couldn’t have done it without them. They were our life raft those few weeks. When we finally got home, we had 6 total weeks of sternal precautions and were just happy to be together again. The big kids needed this time to adjust back to a normal routine. Harry began nursing more being in his own environment and we began to heal emotionally and Harry made great strides physically. He is now almost 15 months old and thriving. 

So what’s next for Harry?  He will continue to be monitored by his cardiologist and may not need another procedure until he is a teen. He still has a couple spots in his heart that are narrowed but his O2 stats are great and he is growing and meeting all his milestones. He will be able to play sports and grow up like any other healthy child. In March, he will be getting a sedated echo and CT scan to get a thorough checkup almost a year post surgery. But we have come so far. From not knowing what the future would hold before he was born, to him turning purple when he was a newborn, to now, thriving and living his best life!

Thanks for reading our story. I hope that it brings you peace if you are going through something similar. If you are family or friends, know that your love is felt and your kindness matters. We love you and are so thankful for you!

Kim and Dan Spalding ❤️