Tristan was born December 5, 2011. His heart defect was picked up after a neonatologist still heard a heart murmur 3 days after he was born. The neonatologist decided to have him sent for an echocardiogram, and at that time it was determined that Tristan had Tetralogy of Fallot and would need at least one open heart surgery in his lifetime, and the first would be before 6 months old.
At each of our ultrasound appointments while I was pregnant, we were told we had a healthy baby boy, no issues. His defect was missed at 4 separate ultrasounds. Tristan did not need immediate surgery and because of this, we were able to make a plan after diagnosis and to choose the best possible care for our son.
Tristan was becoming increasingly symptomatic as he grew as an infant, even with the highest dose of his meds, and is it was determined that his surgery date would be moved up to 4 months of age. He recovered well from his first surgery, only staying in the hospital 5 days.
Once home, he was on round the clock meds, we could not pick up our infant under the arms for two months, and we had to take many precautions to keep him healthy.
Tristan never learned to crawl because he did not like to lay on his chest after surgery. By one year, his only mode of movement was scooting. We had him evaluated by our local regional center to see if he might be eligible for physical therapy to help him learn to move more efficiently and at that time, it was determined that he was globally delayed.
We began going to global therapy twice a week and an additional physical therapist once a week. We went to these therapies for 6 months, until around 18 months he had caught up in the areas of delay.
We went about a year without intervention and at age 2 1/2, when I was almost 9 months pregnant, we found out that Tristan would need another open heart surgery soon to replace his pulmonary valve. The surgeon apologized to me and told me he never had to break the news to someone so pregnant before. He gave us two months to have the new baby and recover before Tristan’s next open heart surgery. Once surgery came, I divided my time between being at the hospital and bringing my breastmilk to my newborn at the Ronald McDonald house. Thankfully, Tristan had no complications after his second surgery and was able to come home 4 days later.
6 months after Tristan’s second open heart surgery, it was determined that the new valve was significantly narrowing due to Tristan’s body rejecting the new valve and he needed yet another intervention. Thankfully, Tristan was able to have the valve widened in the catheterization laboratory.
Fast forward to present, Tristan is 4 years old and we had been told his heart function was the best it’s ever been, until he underwent a routine annual MRI just to make sure his heart was still functioning well.
Unfortunately, the results from the MRI showed that his heart was not functioning as well as they had thought, and that his pulmonary valve was failing. They were hoping he might be a candidate for the melody valve, but the area where it would’ve been placed would obstruct the flow to his heart. His only option for a new valve would be a third open heart surgery. On June 13, 2016, Tristan’s surgeon will put in a bovine pulmonary valve and we are hoping this allow him time to grow and enjoy being a child for some time without intervention.
Thank you so much Rachel. Tristan will be in my thoughts and prayers for his upcoming surgery! Unexpected news like what you’ve had a few times can be so devastating! I pray everything will go as well as possible!