Tyler’s heart journey began in August of 2004 when I went in for my anatomy scan at 5 and half months of pregnancy. Everything was going well until they started to look at his heart. They were spending a lot of time taking pictures and looking at his heart and I started to get worried because they had become very silent at this point, as we had been talking and laughing before. The tech said she couldn’t get a good picture of the right side of his heart so she went and got my OB to see if she could. She came in and started looking and after what seemed like forever she said she couldn’t get a good picture of his heart either and was not comfortable with just leaving it like that, so she referred us to the maternal fetal medicine center where their ultrasound machines are more high tech. At the appointment they took a long time looking at his heart and taking many pictures. This appointment took what seemed like forever and we were extremely nervous the entire time. Finally, the tech told us our worst fear: Tyler did not have the right side of his heart. He would be born with half a heart. They referred us to the pediatric cardiologist that day.
After we found out, I had multiple ultrasounds the rest of my pregnancy and had an induction date set. During each ultrasound the cardiologist was there and each time he tried to look at his two main arteries — the pulmonary and the aorta — to see if they switched positions, but they had a hard time because of the way Tyler was positioned. Finally, during the last ultrasound before I delivered the cardiologist checked again and Tyler had moved perfectly and he was able to see that the two main arteries had in fact switched positions, which meant Tyler had a complex heart defect. We were told that Tyler would require three open-heart surgeries, one of which would be right after he was born. All of this was so much to take in and we were devastated.
On December 27, 2004, Tyler was born in the OR just in case they needed to get him out quickly. Tyler was born with Hypoplastic Right Heart Syndrome, Tricuspid Atresia and Transposition of The Great Arteries. He came out crying and he looked like a normal baby. I was not able to hold him because they had to take him directly to the NICU to get him hooked up and start the drug prostaglandin to keep his heart from failing and to keep him alive.
His first open-heart surgery was at ten days old and we were told that he had 65% chance of not making it. The day of his first surgery was the longest and hardest days of our lives. The surgery took hours, but it went well. He was sent to the PEDs ICU afterwards. When we were finally able to see him we were told his chest was left opened because it was too much pressure on his heart to close it and we were able to see his little heart beating in his chest. We had them cover it because we were going to bring his older siblings in to finally meet and see him for the first time so they could talk to him. Since Tyler had been in the NICU they couldn’t go in and see him.
Tyler’s recovery went well and he went back to the NICU when he was well enough before going home. He did very well at home with feeding and he was also receiving physical therapy to strengthen his trunk from surgery. As soon as we got into a routine, it was time for his second surgery when he was 6 and half months old. Tyler did well with his second surgery and was able to come home after two weeks. During that time Tyler continued to have physical therapy and he started to walk. At that time his physical therapist noticed he had issues with his feet, so we were sent to a pediatric orthopedic where he was diagnosed with Hypotonia in his feet and needed to wear orthotics. When Tyler was 2 and a half he had his third open-heart surgery. That one was supposed to be the “easiest” of the three, but when they got him into his ICU room right after surgery he went into severe arrhythmia and we almost lost him. That was one of the worst days of our lives. Tyler proved he is fighter and fought through it. After his final surgery Tyler continued physical therapy and was on many meds, which we knew would be with him always.
Unfortunately, Tyler’s heart condition wasn’t the only thing he was going to have to deal with. When he was one he was diagnosed with asthma and at the age of eight he was diagnosed with epilepsy after having multiple seizures. Since his surgeries, Tyler became a big brother to his little sister and loves it. He has also had multiple heart catheterizations. In October 2017, Tyler became a Make-A-Wish kid and got to meet his favorite football team the Indianapolis Colts and his favorite player T.Y. Hilton. We are from Indiana and Make-A-Wish flew all of us back there where Tyler met the Colts and formed a close bond with them, especially the team’s star wide receiver and his favorite player T.Y. Hilton. This bond has continued on.
Unfortunately, two years ago Tyler’s heart condition started to deteriorate and his cardiologist felt it was time to start the heart transplant work ups and meet with the transplant cardiologist in Phoenix. For a year and half Tyler went through so many tests, blood work and a heart cath and during that time Tyler’s heart continued to struggle and he ended up needing oxygen, which he now uses all the time. We finally met with the transplant cardiologist and that’s when we found out he was in heart failure and two more heart medications were added to what he already takes for his heart, plus the other medications he takes for his severe asthma and his epilepsy. Also during that time Tyler started seeing a sleep doctor where he was diagnosed with restless leg syndrome and a sleepwalk disorder. He was also having GI issues and he was sent to see a GI specialist where he was diagnosed with lactose intolerance. After meeting with the transplant cardiologist he referred us to the hepatologist to check his liver since his heart condition causes damage to his liver. After testing he was diagnosed with stage 1 fibrosis of the liver and they also found that he has gallstones.
After all of this the transplant cardiologist decided it was time to do a two-day heart transplant evaluation. During the evaluation we met and spoke with the transplant surgeon and he said that the problem going on with Tyler’s heart now is the red blood is mixing with the blue blood in his heart and swirling around in it and he’s not getting adequate blood flow to his lungs because of the big hole in his heart. That was really heartbreaking to hear. Those two days were long and exhausting. After the two-day heart transplant evaluation the transplant team got together the following week and presented Tyler and they all agreed that he is a good candidate for a heart transplant and the transplant surgeon said he wants to do it now before he gets sicker. So, we got the call and was told that Tyler is being listed for a heart transplant and they are listing him at 1b by exception.
So, now we try to keep life as normal as possible while we wait for the call. Tyler has three older siblings who do what they can to keep his mind off of things and he has a younger sister who is 5 years old who loves to play with him. It has been long hard road with lots of bumps along the way but we always overcome these bumps as a family and we make sure Tyler knows he is truly loved and supported. Thank you for taking the time to read Tyler’s story.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.