North Bay infant born prematurely with rare heart conditions makes miraculous recovery
MILL VALLEY - A North Bay family is grateful to have their young son at home with them after much of his early life was spent in the hospital to treat two rare heart conditions.
Doctors went from saying he was too weak to have surgery, to then suggesting a heart transplant would be his best chance to stay alive just weeks after he was born last summer.
"Every day, just the simple things like seeing him wake up in the morning with a smile on his face," said Britt Barrett, Sky Gopin's mother. "Any time that I could hold him, that's what I did, just love him."
Barrett said her son's story is a reminder to trust your gut and be as present as possible each day, hour, and minute.
Those values were tested quickly after learning her son had a congenital heart defect called Ebstein's Anomaly, a deformity of one of the valves in the heart. He also had a separate condition on the left side of his heart.
"I think in the hospital we planned every possible outcome, except for this one," said Adam Gopin, Sky's father.
Dr. Seth Hollander is a clinical professor of pediatrics and pediatric cardiology and the medical director of the Pediatric Heart Transplant Program at Stanford Children's Health. He had never seen a patient with both of these heart defects and learned there had only been one other case at Stanford before meeting Sky's family.
Part of the challenge was that one condition made it difficult to undergo surgery but the other usually requires it.
"Over the course of the weeks when he was in the hospital, when he was waiting for his heart transplant, Sky really proved us all wrong," Dr. Hollander told KPIX. "That's when we really began to understand that Sky was actually improving on his own and was probably too well to need a heart transplant."
Sky was born a month early and only weighed five pounds. The outlook on surgery did not look good as his survival was not clear but he was also too sick for a heart transplant and did not get placed on the list immediately.
He made the list at two-weeks-old, but it was still going to be a challenge to find a match for a baby of his size. Slowly, he started to improve on his own by coming off medication, a breathing tube, and leaving the intensive care unit.
Hollander says he does not know for sure what changed but good medical care and Sky getting stronger over time contributed to his turnaround.
"The more we look for this possible combination and maybe even the genetic causes for this combination, we'll start to find a pattern there, and in that way, Sky is, in his own way, helping other people," he said. "I think Sky's story is really a story of two miracles, one that Sky himself doesn't need a transplant but it also means that some child out there who does need a heart transplant is going to get one because that heart was not used for Sky."
Hollander says Sky has a genetic mutation which explains the combination of symptoms, and they will continue to study it. But for now, he says Sky looks like any other baby. A relief for his parents who are enjoying simple moments with their son around the house or even on walks in the neighborhood.
"One could say that we're incredibly unlucky to have had such a rough start to Sky's life and to have such a rare heart condition," Barrett told KPIX. "One could say we are incredibly lucky to have the recovery that he did."
The family says it took a community of family and friends as well as other parents sharing their experience navigating these rare conditions to help them get to the other side Sky's journey so far. They also say the entire staff at Stanford Children's saved his life and this miracle could not have happened without them.
"I really feel like that's been a huge factor in Sky's recovery is how many people have been rooting for him since day one," Barrett said. "Sky would not be here today if I hadn't gone in with a strange pain that had nothing to do with what was going on with him."
Part of why Barrett said it's important to trust your gut and why the family and staff at Stanford Children's hope Sky's story is an important reminder to check your child early for any possible heart abnormalities. They also hope it shows the impact of choosing to donate your organs.
"If it's within your heart to do so, we always recommend and are very grateful for people who are willing to register themselves to be organ donors because you really can save not one but many lives by doing so," Hollander said.
For Sky's parents, they already have a fresh perspective on life well before his first birthday on overcoming adversity.
"I think Sky has a fighting spirit and he has from the start," Barrett said. "He has really shown all of us what it means to persevere and just be a symbol of resilience."