Oliver “Ollie” Powell was born on January 18, 2022, at the Children’s Hospital of Philadelphia. Ollie and his mom were closely monitored out of state for most of her pregnancy after he was diagnosed at 13 weeks in utero with a rare congenital heart defect, known as Hypoplastic left heart syndrome or “HLHS”. HLHS is a serious and fatal disease in which blood flow is affected in the heart and in Oliver’s case, there was no useable left ventricle as it never developed. Essentially, he would be born with “half a heart”. Emily and Danny, Oliver’s parents, researched hospitals all over the country to find the best care for their son.
They were told three options, abort, carry to term and provide comfort care or find him a top cardiac surgeon in the country to perform immediate surgery upon birth. HLHS requires a series of at least three open heart surgeries, one at birth “the Norwood”, the second around 4-6 months of age, “The Glenn” and the next “The Fontan” closer to 3 years old. There is still no cure today for HLHS and immediate surgical intervention is required for survival.Oliver’s parents and sister as well as Emily’s mom relocated to Philadelphia the day after Christmas 2021.
Oliver was born a few weeks later and had his first open heart surgery at 4 days old. He unfortunately had many setbacks in the next few weeks, one which included a major infection in his sternum that caused them to need to reopen his chest and redo the closure. He also had a paralyzed vocal cord from the surgery and could no longer nurse or drink from the bottle like he could at birth. Oliver had another defect, being that his heart is on the wrong side of his chest (the right side) this defect is called dextrocardia. His heart was also rotated in, making the surgeries a lot more complex even for the top cardiac surgeon at CHOP. That surgeon told his parents that the probability of a child with HLHS and dextrocardia was 1 in 100 million.
If the path had been linear for Oliver, he would have been home hopefully in a month in a half, but the next 4 months Oliver proved to be very unstable and would require hospitalization and monitoring during the “interstage period” before the next open-heart surgery. He spent more than three months on a ventilator. He met his sister for the first time at 3 months of age due to covid restrictions. He did not get to go outside (with nurses) until he was 4 months of age. The next surgery was his ticket home as many doctors had painted a rosy picture of a normal life with a stable child. After his next surgery, lightning struck. Oliver had a completely unexpected and sudden cardiac arrest. During this time, he received 35 minutes of CPR and was surgically placed on ECMO life support. ECMO is a blood circulation technology that oxygenates your blood and preserves your organs, most importantly, your brain. During this time, you are fully paralyzed, and a ventilator is breathing for you. Oliver was given less than a 10% chance of survival. Not only that, but his parents were told based on the portable MRI, he had suffered a profound brain injury and “may never be able to take care of himself”. His right side of the brain was completely dead. Those next 50 days, Oliver beat all the odds. He was finally able to come home in July of 2022.
Ollie was recently diagnosed with cerebral palsy. He just turned a year old! He’s not yet rolling or sitting up but he’s getting there! His right eye has nerve damage and he’s lost some vision. He’s currently on a feeding tube but starting to eat some purees by mouth. As the family could never find nursing care due to the shortage, Emily had to leave her job to care for her son. Oliver is an incredibly loved and happy kid and never starts or ends the day without a heart melting smile. He’s touched so many lives around him and given his parents an entire new perspective and appreciation on life. The family is in such awe of the support and kindness they have received through this time from friends, family, and complete strangers. It truly takes a village.