Oliver was prenatally diagnosed with a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), meaning the left side of his heart (including his left ventricle) is critically underdeveloped and can’t effectively pump blood to the body.
The current standard of care for single ventricle HLHS is a series of 3 heart surgeries called the Norwood, the Glenn, and the Fontan. These do not repair his heart but change its anatomy and physiology to work as efficiently as possible with only one pumping chamber.
Right after his diagnosis, we made the decision to move from Arkansas to Houston, Texas and receive care at Texas Children’s Hospital. He was born at TCH in June 2018. He spent the first 232 days of life in the CICU. During that time he underwent 2 heart surgeries, 1 catheterization, a diaphragmatic plication, GTube placement, and abdominal laparotomy.
His first heart surgery, the Norwood, was at 7 days old and extremely difficult on him and he suffered many complications including a paralyzed diaphragm and paralyzed vocal cord. He remained on a ventilator for the first month and a half of life and had some very hard days.
Oliver remained in the hospital through the HLHS interstage period, and received his second single ventricle heart surgery, the Glenn, at 4.5 months old. His recovery was much easier with the Glenn but he still spent many more months in the ICU having feeding issues, weaning medications, and multiple setbacks and complications including a bowel perforation.
We were finally able to be discharged from the hospital 234 days later in January 2019. We had stayed local in Houston for about a month when he came down with a minor virus that put him into heart failure. Thankfully after two weeks of treatment at TCH his cardiac function had returned and he was discharged from TCH once again.
In April of 2019 he was able to go home to Arkansas for the first time. He was GTube dependent at the time and was getting multiple medications around the clock. He did at-home physical therapy, speech therapy, and developmental therapy.
Despite how his medical history looks on paper, Oliver has been a very happy and active toddler for the past 3 years. He loves baseball (Go Astros!), music and dancing, Blippi, Baby Yoda, Dude Perfect, pepperonis, and the color yellow. He adores his big brother Elliot, who was also born with a heart defect, and his dog Archie.
We headed back to Houston July 2022. After his pre-Fontan Cath in April and many years of no hospital interventions, 4 year old Oliver was finally showing signs of being ready for the third stage of the single ventricle palliation surgery, the Fontan. This is typically the easiest of the three surgeries to recover from. But Oliver’s Journey has rarely been typical.
He had a another catheterization on July 1st to place a stent in his inferior vena cava which had become very stenosed. He had his Fontan procedure the next week on July 7th. The procedures themselves were uneventful but the events that transpired in the consecutive days were not.
After a few rough nights Oliver finally slept well overnight on Sunday, July 10. We were expecting a day with lots of rehab with PT and planning to moving to the step down unit within a couple of days. During a routine ECHO that morning, a massive clot was found in the aortic root of Oliver’s heart. Further complicating the situation, towards the end of the ECHO the clot was much smaller indicating part of it broke away and went somewhere else in the body.
Very quickly Oliver was taken down for a CT scan of his head, neck, and abdomen. The results of the CT and a follow-up ECHO showed the clot that broke away was found in his left coronary artery. A significant number of doctors and surgeons gathered to formulate a plan, Oliver was rushed up to the Cath lab to attempt removal of the clot. Due to Oliver’s condition this was a very high risk operation and the ECMO team along with a surgeon were present in the room for the procedure. The interventional cardiologist was able to isolate and remove the clot, and a neuro radiologist further confirmed no clots were present in his brain.
About 5 hours after returning from the Cath lab, Oliver’s condition deteriorated to the point he needed an emergent intubation and a significant amount of medication was given to preserve life.
On Wednesday July 13, Oliver underwent another heart surgery to clean out any remaining clots in his aorta and to place Berlin cannulas on his heart. This allowed the surgeon to attach a Berlin heart outside Oliver’s body. This mechanical support device would take over the lion share of Oliver’s heart pumping and give his heart some time to rest.
The hope is that his heart can recover its function and eventually the Berlin heart can be removed. If his heart doesn’t return to its previous function, if eligible, Oliver will be placed on the heart transplant list.
The timeframe that we were expected to be in Houston has now changed drastically. We are looking into moving here long term and will have a lot of unexpected expenses to cover. Moving, rent, daily parking fees, etc.
An overwhelming amount of people have been asking how to help us and this is the most tangible need we have right now. We can’t thank you all enough for the outpouring of love and support during this difficult transition in our lives. ❤️
Right after his diagnosis, we made the decision to move from Arkansas to Houston, Texas and receive care at Texas Children’s Hospital. He was born at TCH in June 2018. He spent the first 232 days of life in the CICU. During that time he underwent 2 heart surgeries, 1 catheterization, a diaphragmatic plication, GTube placement, and abdominal laparotomy.
His first heart surgery, the Norwood, was at 7 days old and extremely difficult on him and he suffered many complications including a paralyzed diaphragm and paralyzed vocal cord. He remained on a ventilator for the first month and a half of life and had some very hard days.
Oliver remained in the hospital through the HLHS interstage period, and received his second single ventricle heart surgery, the Glenn, at 4.5 months old. His recovery was much easier with the Glenn but he still spent many more months in the ICU having feeding issues, weaning medications, and multiple setbacks and complications including a bowel perforation.
We were finally able to be discharged from the hospital 234 days later in January 2019. We had stayed local in Houston for about a month when he came down with a minor virus that put him into heart failure. Thankfully after two weeks of treatment at TCH his cardiac function had returned and he was discharged from TCH once again.
In April of 2019 he was able to go home to Arkansas for the first time. He was GTube dependent at the time and was getting multiple medications around the clock. He did at-home physical therapy, speech therapy, and developmental therapy.
Despite how his medical history looks on paper, Oliver has been a very happy and active toddler for the past 3 years. He loves baseball (Go Astros!), music and dancing, Blippi, Baby Yoda, Dude Perfect, pepperonis, and the color yellow. He adores his big brother Elliot, who was also born with a heart defect, and his dog Archie.
We headed back to Houston July 2022. After his pre-Fontan Cath in April and many years of no hospital interventions, 4 year old Oliver was finally showing signs of being ready for the third stage of the single ventricle palliation surgery, the Fontan. This is typically the easiest of the three surgeries to recover from. But Oliver’s Journey has rarely been typical.
He had a another catheterization on July 1st to place a stent in his inferior vena cava which had become very stenosed. He had his Fontan procedure the next week on July 7th. The procedures themselves were uneventful but the events that transpired in the consecutive days were not.
After a few rough nights Oliver finally slept well overnight on Sunday, July 10. We were expecting a day with lots of rehab with PT and planning to moving to the step down unit within a couple of days. During a routine ECHO that morning, a massive clot was found in the aortic root of Oliver’s heart. Further complicating the situation, towards the end of the ECHO the clot was much smaller indicating part of it broke away and went somewhere else in the body.
Very quickly Oliver was taken down for a CT scan of his head, neck, and abdomen. The results of the CT and a follow-up ECHO showed the clot that broke away was found in his left coronary artery. A significant number of doctors and surgeons gathered to formulate a plan, Oliver was rushed up to the Cath lab to attempt removal of the clot. Due to Oliver’s condition this was a very high risk operation and the ECMO team along with a surgeon were present in the room for the procedure. The interventional cardiologist was able to isolate and remove the clot, and a neuro radiologist further confirmed no clots were present in his brain.
About 5 hours after returning from the Cath lab, Oliver’s condition deteriorated to the point he needed an emergent intubation and a significant amount of medication was given to preserve life.
On Wednesday July 13, Oliver underwent another heart surgery to clean out any remaining clots in his aorta and to place Berlin cannulas on his heart. This allowed the surgeon to attach a Berlin heart outside Oliver’s body. This mechanical support device would take over the lion share of Oliver’s heart pumping and give his heart some time to rest.
The hope is that his heart can recover its function and eventually the Berlin heart can be removed. If his heart doesn’t return to its previous function, if eligible, Oliver will be placed on the heart transplant list.
The timeframe that we were expected to be in Houston has now changed drastically. We are looking into moving here long term and will have a lot of unexpected expenses to cover. Moving, rent, daily parking fees, etc.
An overwhelming amount of people have been asking how to help us and this is the most tangible need we have right now. We can’t thank you all enough for the outpouring of love and support during this difficult transition in our lives. ❤️