A heart-breaking diagnosis

Donna & Seth's story

Pregnancy and parenting were old hat for Gibbons when she learned she was expecting at

47. Aware that her age put her at a higher risk for birth defects, Gibbons was proactive in seeking prenatal care – or so she thought. She saw a perinatologist and had 4D ultrasounds.


Everything pointed to a healthy delivery, and Seth’s APGAR scores of 9 and 9.5 allowed her to breathe a sigh of relief. But a sharp nurse at Vassar Brothers Medical Center in Poughkeepsie told Gibbons she wanted to take the baby to the nursery.


“She said she thought she heard a murmur,” Gibbons recalls. “I thought they’d bring him to the nursery, then bring him right back.”


As the minutes passed, Gibbons got anxious. Still groggy from the Cesarean, still hooked to an IV, she hobbled down the hall.


She found a team of healthcare workers gathered around her newborn and was told they’d arranged for a helicopter to take him to the neonatal intensive care unit at Westchester Medical Center in Valhalla.


Less than 24 hours after surgery, Gibbons signed herself out of Vassar Brothers against medical advice and raced to Valhalla.


There the pediatric cardiologists told her that her son had a double outlet right ventricle.

In a normal heart, the pulmonary artery is connected to the right ventricle, the aorta to the left. In Seth, both are connected on the right, meaning both the oxygen-rich and oxygen-poor blood in his body are mixed, forcing his heart to work double-time.


It’s one of the most rare of the 35 different CHDs, and in Seth’s case it’s been complicated by a narrowing of the aorta and valve insufficiencies. Like Bryce, Seth has already undergone two open heart surgeries. He coded after the second, with his mother in the room watching doctors frantically working on her son.


With his chocolate brown eyes and quick smile, Seth is a little ladies man. But Donna isn’t shy about asking people to wash their hands before they hold him; she carries antibacterial wipes everywhere she goes. “Something like strep throat could kill him,” she says matter-of-factly.


By their fourth child, most parents have relaxed their eagle eye watch, but Gibbons can’t. She’s watching for the distended belly, labored breathing, coughing and congestion – signs that he’s in congestive heart failure.


The March of Dimes reports there is no clear cause of CHDs, and neither the Rogersons nor Gibbons have found anything in their research. There’s no history in either family, nothing otherwise remarkable about the women’s pregnancies. Neither knew the statistics that now roll off their tongues – 1 out of every 100 child born has some sort of heart defect.


The March of Dimes reports, “The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger.”


That’s where proactive parenting comes in. “Follow through with your doctor,” Gibbons says. “They’re supposed to be part of YOUR team.


“Be proactive and ask, ‘how is the heart, how is the kidney, how is the brain?” she continues. “Don’t just take their word for it.”


Catching things early can make all the difference, evidenced by Rogerson’s successful fetal intervention surgery. But even where there’s little that can be done, Gibbons suggests talking to other parents of CHD children. “Talking to Nicole opened the door for me, helped me realize there are plenty of other children [with CHD] out there living their lives,” she explains.


Jeanne Sager is a mom to Jillian and writer and photographer from Callicoon Center.


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