Our son, Oliver, was born with Pulmonary Atresia with Intact Ventricular Septum. Thankfully, this was discovered during a routine anatomy scan which allowed us to digest what CHD’s were, what PA/IVS meant, and begin to prepare for Oliver’s arrival and potential interventions. Even though we are from Charleston, South Carolina, we chose to complete all interventions at Boston Children’s Hospital and are so thankful for their abundant knowledge, skillful surgeons, and compassionate cardiac teams.
Oliver was born on April 17th, 2020, and had his first heart catheter procedure that same day. During our one-month stay in Boston, Oliver completed three cath lab procedures and received a PDA stent, a temporary fix in order to allow time for Oliver, and his heart, to grow. We finally were discharged and en route to bring Oliver home for the first time.
As we adjusted to home life, we began to slowly see his oxygen saturation dip which led us to go back to Boston about 5 weeks later. On our second trip back to Boston, we planned for a quick visit – a routine cath procedure to enlarge the stent in Oliver’s heart and determine if another stent (RVOT) would be placed. Oliver successfully came out of the procedure with an RVOT stent and a dilated PDA stent. He was recovering well and was extubated that night. We left the hospital knowing that our son was in the best of hands and we headed to bed ourselves after a stressful day.
At 4:00 AM that Saturday morning we received the wake-up call no parent should have to receive. Oliver attempted to drink a bottle and went into cardiac arrest. Oliver was saved by the hands of (probably) every person in the CICU as they performed CPR for ~40 minutes. They were able to place Oliver on ECMO and the team prepared us for immediate open-heart surgery to save his life. After another month at Boston Children’s and another cath lab procedure post-open-heart surgery, we were released again to bring our sweet Oliver home.
We are so thankful for the courage and strength Oliver has every day to keep on keepin’ on. He is the true definition of a warrior. Since we’ve been home Oliver has kicked the NG tube/feeding tube, consistently takes bottles and tries new solids, enjoys bathtime, going for walks outdoors, playing with his siblings, and learning all the “normal” baby things. We can’t believe what he has overcome and the determination he has to go go go!
With all of this being said, we still have a long journey ahead of us. Oliver will continue to have routine echocardiograms, cath lab procedures, and potentially more surgeries. We, as parents, will continue to administer medications, check his oxygen saturations, and check-in with our home monitoring program through the hospital. We know the obstacles he will continue to face and we are so thankful we were chosen to be his loving parents to support and encourage him every step of the way.
Luckily, he finds great comfort and security in his Wubbanubs as well. We’ve taken many photos throughout his almost 9 months of life and the majority of them feature one of his beloved Wubbanubs too. We are hopeful to add the CHD Bear to our collection soon. Thank you, Wubbanub, for helping us get through it all.