Baby Madeline’s plump cheeks have won over the heart team at Rady Children’s Health, and this Mother’s Day, her family is celebrating something they have waited months for, having both daughters home together.
Madeline was born on Jan. 7 with congenital heart disease and spent two months in the neonatal intensive care unit and six weeks in the cardiovascular intensive care unit. Her sister Elena, 4, had seen her during fetal echocardiograms while Erica Cura was pregnant, but only recently got to be with her at home in person.
Erica and Mark Cura said they are thankful to have both girls together on Sunday. “We are profoundly grateful,” Erica says.
Both Madeline and Elena were diagnosed before birth with congenital heart disease and were cared for in the Fetal Cardiology Program at Rady Children’s Health in Orange.
Elena, who loves ballet and soccer, had complex heart issues before birth and in early infancy that improved with medical therapy and did not require surgery.
Madeline’s condition was harder. “It was super scary,” Erica recalls.
After birth, Madeline’s complex heart findings progressed. She needed medical therapy, feeding support and open-heart surgery to repair her right-sided, tricuspid, heart valve and close a large hole in her heart, a ventricular septal defect. After surgery, she had a stroke and acute kidney injury. She was put on dialysis to get her kidneys functioning.
Erica and Mark said it first felt less scary to have a second child diagnosed in utero with the same heart condition. But Madeline’s complications made things harder. During one stretch, she was not able to eat for a week.
They said Madeline’s cardiologist, Dr. Nita Doshi, medical director of fetal cardiology, helped guide them through it. “She’s very thorough and explains everything in a way we understand, and she’s very kind and positive,” Erica says.
Erica said the full care team also stood out to them. “We could go home at night knowing the nurses loved Madeline and were taking the best care of her,” Erica says.
Erica and Mark shared their story after a recent visit to the gastroenterology clinic, a little more than a week after Madeline went home on April 16.
A member of Madeline’s care team changed the dressing on her nasogastric tube, which goes down the esophagus and into the stomach for feeding. Madeline has had the NG tube since birth.
She now weighs nearly 5.9 kilograms, at the higher end for a baby her age. Madeline takes about 80 percent of her nutrition from a bottle and relies on the NG tube for the remaining 20 percent.
“We feel so blessed to have her home,” Erica says. “We’re still getting used to it and Elena is getting to know her baby sister.”
The family has prepared their house for Mother’s Day and plans to share carne asada, ribs and steaks with loved ones on May 10.
“The hope, grace and resilience that Erica and Mark have shown upon bringing their first baby into the world through their second baby going home after heart surgery is remarkable and inspires our team to enact the same values in our care,” says Dr. Doshi, who also cared for Elena. “We join in honoring Erika as a hero for Mother’s Day.”
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