On January 16th we were told that our baby had a questionable mass on his heart and was sent over to a high risk OB for an ultrasound to be sure. At this ultrasound appointment it was confirmed that our baby boy would be born with a major heart defect called Hypo-plastic Left Heart Syndrome (HLHS) and would need open heart surgery when he is born. We were told that his chance to make it through a full pregnancy was less than 58% and his chance of death after birth was almost 90%.While trying to wrap our heads around this diagnosis we wanted to see if there was anything that could be done while he was still in utero. We were told that Texas Children’s would discuss an intervention with us consisting of him getting a stint put in while in utero. We underwent tests and amniocentesis as well only to discover our boy was not a candidate for the intervention and he would make it full term!
On May 2nd 2023 our beautiful boy was born ! As soon as he was born he was transported over to the children’s hospital. His first open heart surgery was done at 2.5 days old and what placed on ECMO(a machine that does the work for heart and lungs allowing them to rest)once it was completed. While on this machine he suffered a brain bleed that lead to him seizing on multiple occasions. After 6 days of being on ECMO he was stable enough to come off. After coming off he was able to recover and started waking up and being a bit more active . During this time Syncere has Coded twice , had his lungs collapsed , and need intubation.
Syncere was about 5.5 months old when we were told he would need a transplant and we have been patient awaiting his call for a match since then. Our boy has never been outside of hospital after almost a year of waiting. We are asking for support in this time. Whether that be a donation or just sending up prayers and keeping our family in your thoughts we would appreciate it .
Even in this emotional time , our baby boy has never failed to amaze us with his determination and perseverance to fight.
Links for information:
HLHS-
Pediatric Heart Transplants
May 15th we received the call that he had a match and he received his transplant the next day
Organizer
