February is Heart Month
Baby Ace, as we called him before finding out his gender and deciding a name, was a beautiful surprise! The moment I found out I was pregnant I did all the healthy things you can imagine. I was very conscious about what I put into my body and was taking great care of myself. My pregnancy was progressing as wonderfully as you’d expect. We had an ultrasound at 15 weeks where they were able to tell he was a boy. Five weeks later when we went in to have our anatomy scan, I thought it would be brief and quick; after all, we already knew he was a boy. What else was there?
Little did I know about all that was checked out during the anatomy scan. The doctor went through all the images taken minutes prior by the ultrasound technician. With each photo he clicked he said the words “normal.” Eventually he got to the heart pictures and paused for what felt like an eternity. I blurted out, “NORMAL?????” He looked at us and told us there was a problem with baby’s heart.
He knew it was a major problem. Not a slight defect that might resolve. Not even one that could be fixed with one surgery. This was big. He didn’t give us much insight other than that. He said I’d have this baby in St Louis and he wrote what he thought was the diagnosis on a sticky note and we were sent on our way.
We found another maternal fetal medicine doctor for a second opinion while we waited for our referral call from Cardinal Glennon for a pediatric cardiologist. This new doctor was much more thorough and he had much better bedside manner. However, he was still extremely perplexed by the heart he was seeing. He gave us so much insight on what it could be and made us aware that, despite being extremely serious, we could be hopeful.
After grieving for some time, my husband and I went into proactive mode. We were so ready to fight for our son. We looked into multiple children’s hospital all over the country, read about every surgeon. We even traveled to Texas to visit one there. We ultimately fell in LOVE with the Fetal Care Institute and Dallas Heart Center at Cardinal Glennon. The team of doctors are incredible, and we felt so at home. It’s a strange feeling to feel at home in a hospital, but we did, and we still do.
We studied the infant heart backwards and forwards. So much so, that some of Watson’s NICU doctors thought we were med students. I was sad and scared and still grieving some each day, but we went into full planning mode and wanted to give our boy the best chances. My hopes and my dreams at the beginning of our journey was that Watson would be born stable and healthy in all aspects aside from his heart. I knew our plan up until his birth. That’s as far as we could plan.
The best case scenario would be that when he was born he would be stable enough to not have any surgical intervention until his Glenn procedure between 4 and 6 months of age. We were made very aware that this was best case scenario and would most likely not happen. We were ultimately prepared to have to send Watson off for a procedure right away. We were in shock, but we got best case scenario.
Aside from having to be induced for planning purposes, my birth with Watson was basically just like a birth with a heart healthy baby would be. I had incredible doctors and nurses there to support me the entire time. Watson was born in August 2020 and I’m so thankful that he was stable. He was screaming and kicking all the wires off him and he looked so healthy. He was doing exactly what the doctors wanted him doing at birth. I got to hold him and have a wonderful family moment with my husband, and even my mom who was able to come in. It was amazing. I know not everyone gets that, and I’m so thankful I did.
My husband went with Watson to Cardinal Glennon hospital when they transferred him, and I was required to stay at the hospital I delivered him at for one night. The hardest part was moving to the recovery floor where other moms had their babies with them, and my arms were empty.
After he was born, they did an echo of Watson’s heart and the result was mostly the same as it was before. There are many terms for it and some doctors cannot agree on what exactly to call it, still to this day. His heart of VERY complex. The consensus is Double Inlet Left Ventricle/Transposition of the Great Arteries. Simply put, he has a single ventricle heart. Instead of two pumping chambers, he has one pumping chamber doing all the work. Regardless of the name of his complex heart condition, the route of intervention is the same.
Fortunately, we were able to take Watson home after an 8-day NICU stay and monitor him closely at home. He had and still has very regular checkups in St Louis and we knew things could change at any moment. Watson ended up having his cath procedure in December 2020 at four months of age and then his first open heart surgery in January 2021 at close to six months of age. CHD is unpredictable and can change at each moment. Right now, Watson is stable while waiting for his next surgery and we are thankful for that.
I knew of OAW when I was pregnant and was hoping to use their services for newborn pictures at the hospital when Watson was born. We didn’t know what the days after his birth would look like so I wasn’t sure if we’d be able to or not. We actually had to deliver in St. Louis in the height of COVID and a lot of hospitals restrictions were taking place. Unfortunately, this made newborn pictures not possible.
We were so so happy when we were able to use their services for Watson’s first birthday photos! They turned out amazing and I’ll always treasure them. Photos are something I never regret and I’m so thankful we’ll be able to continue our journey sessions with them. I love seeing how far our boy has come after all he’s been through.
Watson is perfect to me. I cannot imagine our life without him, he’s changed everything about the way my family and I see things for the better. Our entire perspective on life changed when we found out about his heart during pregnancy. Then it changed even more once we saw him for the first time. Then again, after he came out of surgery.
Right now, Watson is stable. However, CHD is very unpredictable and things can change fast. We count our blessings and take each day as it comes. We continue to work on being the most present that we can be with our sweet boy, because of how much we know that things can change in an instant. Overall, Watson is happy and thriving and is just like any other toddler! You’d never know that he has basically half a heart and only runs on about 84% oxygen at all times. He is a true courageous super hero!
We are just living life happily, and waiting for his next intervention on his heart. If everything goes as planned, his next open heart surgery will be when he’s between 3 and 5 years old. It’s called the Fontan procedure and it’s the last planned intervention for children with a single ventricle heart. It’s the second phase of re routing the blood flow in his heart to work off one pumping chamber instead of two.
The moment he was born, I was ready to get proactive about the next phase of his life, on this side of the realm. Watson’s strength and my own exceeded my expectations then and still do today. We are always changing and growing alongside with him. We’ve gained strength and courage that we didn’t know was possible to have. Watson has brought us closer together as a family and given me and my husband the best community and friends that I could ever imagine.
Funding for research in congenital heart disease is a crucial aspect in giving children like Watson an optimistic future. The future is brighter and brighter each day, and research is continuing to evolve. This gives me hope. With continued funding and research the possibilities for children going into adult with CHD are endless.
Research has come such a long way in just the last 30 years! The chances of Watson being here with us if he were born 30 years ago, is far less. His next surgery is not a fix, or a cure and many children going into adulthood like Watson will eventually require a heart transplant. Today we are seeing more and more adults living without having had a heart transplant yet and that is amazing! Above all of this, I just want my son to live a happy and fulfilled life.
Ashley Kamler
Mommy to Watson
Congenital Heart Defect
#heartwarrior
