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Heart to heart Friendship helps families through difficult times
By: TIFFANY WOODALL Review Staff firstname.lastname@example.org, Staff Writer
It’s no secret that caring for a newborn baby enduces a bit of anxiety for first-time parents. But when that baby is diagnosed with a potentially life-threatening complication affecting its most vital organ, normal new-parent anxieties take a back seat to the concern associated with ensuring that child makes it to tomorrow.
That concern was reality for Greta and Darnell Hurst, of Stevens Road, Ephrata, when a doctor discovered during a 22-week ultrasound that their son Bronson, now 5, would be born with a congenital heart defect (CHD). This was familiar territory for the couple, whose daughter Mariah had been still born less than two years earlier as a result of a congenital heart defect, but that didn’t make the news any easier to digest.
"For a split second, I thought he was kidding," said Greta of the moment she learned about her unborn son’s condition. "And then I thought, ‘No, doctors don’t kid.’"
Greta wondered whether she and Darnell would have to bury another baby.
The Children’s Hospital of Philadelphia (CHOP) was able to determine Bronson’s heart defect in utero, diagnosing him with Pulmonary Atresia with Heterotaxy Syndrome and a Single Ventricle, which is doctor-speak for lungs being disconnected from the heart and having only one pumping chamber as opposed to two.
Baby Bronson was two days old when he underwent his first surgery in February of 2008.
"Nothing can truly prepare a parent to see their newborn baby come back from open heart surgery," said Greta.
But they’d likely had more preparation than other parents of CHD patients thanks to their friendship with Jon and Melodi Miller, of Ridge Avenue, Ephrata. The Millers’ first-born daughter, Aliya, now 6, had been diagnosed with a heart defect at 20 weeks gestation. The couple shared a photo of Aliya sprouting wires and IV tubes post-surgery, giving the Hursts a glimpse of what to expect after Bronson’s first trip to the operating room.
"She tried to prepare me for our journey," said Greta.
Jon, Darnell and Greta graduated from Ephrata High School together, and Bronson, Aliya and Alicia, the Hursts’ oldest daughter, in fifth grade, all attend Lititz Area Mennonite School.
Melodi encouraged her friends to seek care for Bronson at CHOP. They did, and the day Bronson was born, Jon and Melodi were there on the same floor with Aliya, who was having a previous surgery reversed.
"It was our understanding that CHOP was the best in the country for pediatric cardiology," said Jon.
Aliya suffers from Hypoplastic Right Heart Syndrome, which means she has an underdeveloped right ventricle, a condition referred to as VACTERL. Like Bronson, Aliya had been swept away for surgery only days after her birthday to attach an external bag to her large intestine as a means of excreting waste. Who said anything about diapers?
"Try keeping a colostomy on a baby," said Jon. "It was quite the struggle."
Four months later, Aliya had surgery on her spinal chord, and two months after that endured her first open heart surgery. The hole between Aliya’s ventricles yielded three times too much pressure to her lungs, so doctors placed a clamp on Aliya’s pulmonary artery to restrict blood flow to her lungs.
"After that surgery I counted all the stick marks when we got home, and it was 43." said Jon. "Twenty-three stick marks on her right foot, just from attempting to get veins for IVs.
"I had to pin her down each time. Her face, looking at me, ‘why are you letting this happen to me?’ will be enblazened in my mind," he continued.
"That was hell," said Melodi. "They would stick her over and over and over."
Aliya’s second open heart surgery came when she was 13 months old, and her third one was scheduled when she was 4.
"They told me I could take her to the operating room," said Jon. "I laid Aliya on the operating table, and that’s pretty unheard of. I set Aliya on the table and the anesthesiologist came up from behind with the face mask. Just her face, her fighting, I’ll never forget it."
"That’s not something you really want to remember," said Melodi.
Aliya’s sleeping habits might be the only "normal" problem Jon and Melodi faced. Babies cry, right? Imagine that cry, in the middle of the night, not because of hunger or separation anxiety, but because of medical trauma, the result of spending weeks in a hospital room, constantly being interrupted by medical personnel monitoring surgical recovery.
"For me, all the things we were experiencing was like a precipitating event that threw me into a state of generalized anxiety and insomnia that I struggled with for a few years and could probably easily fall back into," said Jon.
Aliya’s younger sister, Mariah, now 4, felt the effects of Aliya’s condition in the time spent away from her parents and sister.
"I think she kind of had feelings of abandonment," said Jon. "She didn’t see us for three weeks, and then there was a new baby (Braedon, now 2), so you saw this anger and kind of rage. You still see remnants of that now in some of her behaviors."
Despite what the Hursts and Millers have gone through with Bronson and Aliya, they’re thankful their situations aren’t worse.
"If I let myself, I could spend my whole life worrying about Aliya," said Jon. "I’ve learned what it’s like to spend extended periods of time in the hospital with a child, feeling helpless, agonizing over what is being done to them and getting barely any sleep during the process. I’m now able to empathize with people who have a child that is battling a life-threatening illness."
Unfortunately, not all families discover congenital heart defects before birth. Some learn of their child’s condition when their newborn baby is airlifted to a cardiac center, like the one at CHOP, mere minutes after taking its first breath.
"I think people are just so unaware, and I think it’s just lack of information out there," said Greta, who feels strongly about spreading awareness to benefit the multitudes of children and their families affected by CHD.
Visit childrensheartfoundation.org, giftofchildhood.org or chop.edu for more information about CHD. More CHD, page A16