Memories and Milestones
Joy stops in the middle of her sentence and catches her breath. She is not going to cry, but the memories rush back all at once.
She takes a deep breath, squeezes her eyes shut for a moment and looks around at all the happy families: big grins, long hugs. She smiles. The Johns Hopkins All Children’s Hospital Congenital Diaphragmatic Hernia (CDH) Meet and Greet is like a class reunion. Everyone seems to know each other. They hug and kiss each other’s kids. Remark on how big everyone is getting. But mostly, they radiate.
Joy is here enjoying this event because, like all of these other families, her son Drew survived. She nods, knowingly and returns to the conversation.
“These people are all my family,” she says. “Not just the parents, but this team, this hospital. I can’t even put it into words. Whenever Drew has a milestone. Walking. A birthday. We call the hospital to say, ‘Thank you.’ We wouldn’t be witnessing this if not for Dr. David Kays. Dr. Stacey Stone. Joy Perkins. Rachael Pelaez. They get it. They were here for us when we needed them, and they will always be with us. Whatever we need. It’s a given.”
Drew, now 2, had his CDH surgery at 36 hours old as part of a comprehensive program that cares for kids like Drew from pre-birth through their surgery and follow-up therapies as needed. Like much of what Kays, director of the only known dedicated CDH unit in the country, does, it was a success. CDH affects about 1 in every 3,000 pregnancies and is typically found during the 20-week ultrasound. Joy and her husband, Andrew, were immediately referred to Johns Hopkins All Children’s and came from Venice, Florida, to meet Kays, who has had uncommon success treating CDH and immediately put them at ease.
“We were so ready for the surgery. They prepared us completely. I was so calm,” Joy recalls.
“What we provide is an extensive amount of experience, treatment consistency, and a track record that puts these families at as much ease as possible when facing CDH,” Kays explains. “Drew is a great kid and, as a CDH and ECMO [extracorporeal membrane oxygenation] survivor, his outstanding outcome is emblematic of what we strive for, day-in and day-out.”
“Our CDH patients are having higher survival rates than just about anywhere in the country, and even better than that, they are surviving well and are neurologically intact,” Stone says with pride. “It’s wonderful to see them come back so we can see how incredibly well they are doing.”
Drew’s mom is a cardiac nurse. She credits her own experience in health care with allowing her to recognize the excellent standard of care Drew received at Johns Hopkins All Children’s.
“We got to hold Drew for the first time at 20 days. Our daughter, Maddie, was there and immediately one of the nurses grabbed a coloring book and kept her busy so we could focus all of our attention on Drew for that wonderful moment,” Joy recalls. “I can’t stress enough how much little things like that meant to us. I was just extremely impressed with the level of skill and the level of caring.”
Maddie, now 6, played her role for her little brother as well. “We put her in a doctor’s coat. She would check him with her stethoscope, but the incubator was so high that she needed a stool. They adore each other.”
These days, Drew is a happy, giggling toddler who can’t help but grin from ear to ear as he runs around the room seeing all of his old friends, doctors and nurses. They are just as eager to see him. They call him by name. This is as proud a moment for the CDH team as it is for the families.
This story first appeared in For the Kids magazine, a publication of the Johns Hopkins All Children’s Foundation. To support the Center for CDH, call Chris Decent, senior director, development, at 727-767-3867.