It’s the plump cheeks. They get people every time and are one of many reasons Baby Madeline has enamored every member of the heart team at Rady Children’s Health who has met her.
Her big sister, Elena, 4, had the opportunity to see Madeline in her mommy’s tummy during her fetal echocardiograms but only recently, at home, in person — just in time for Mother’s Day.
Born Jan. 7 with congenital heart disease (CHD), Madeline spent two months in the neonatal intensive care unit (NICU) and six weeks in the cardiovascular intensive care unit.
Erica and Mark Cura couldn’t be more thankful to have both sisters together on Sunday.
“We are profoundly grateful,” Erica says.
Shared medical condition
Both Madeline and Elena were prenatally diagnosed with CHD and cared for in the Fetal Cardiology Program at Rady Children’s Health in Orange.
Elena, who loves ballet and soccer, had complex heart issues prenatally and the early period of infancy that have improved with medical therapy and did not require surgical intervention.
Madeline, however, experienced a much rougher road.
“It was super scary,” Erica recalls.
Madeline’s complex heart findings progressed after birth and required medical therapy, feeding support, and ultimately open-heart surgical intervention to repair her right-sided (tricuspid) heart valve and to close the large hole in her heart (ventricular septal defect). Her post-operative course was complicated by a stroke and acute kidney injury. She had to be put on dialysis to get her kidneys functioning.
A steady, guiding hand
At first, it was less scary having a second child diagnosed with the same heart condition in utero, Erica and Mark recall.
But when complications ensued with Madeline – during one stretch, she wasn’t able to eat for a week — things got challenging for her parents.
The steady, guiding hand of Madeline’s cardiologist, Dr. Nita Doshi, medical director of fetal cardiology, helped a lot, they say.
“She’s very thorough and explains everything in a way we understand, and she’s very kind and positive,” Erica says.
The entire care team was wonderful, she and her husband say.
“We could go home at night knowing the nurses loved Madeline and were taking the best care of her,” Erica says.
Settling in at home
Erica and Mark shared their story after a recent visit to the gastroenterology clinic, a little more than a week after Madeline went home April 16.
Member of Madeline’s care team had to change 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.
Madeline, who has light-brown hair that matches the color of her eyes, now weighs nearly 13 pounds – at the higher end for a baby her age.
Pleasingly plump, she doesn’t appear to have been a baby who weathered serious medical issues – save for the NG tube she will continue to wear for a while.
Madeline now takes about 80 percent of her nutrition from a bottle and relies on the NG tube for the remaining 20 percent of her food.
“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.”
Erica and Mark have gotten their house in order for Mother’s Day and look forward to savoring 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.”
Get more expert health advice delivered to your inbox monthly by subscribing to the KidsHealth newsletter here.
Learn more about CHOC’s Heart Institute
CHOC and UCLA Health together have been ranked among the top children’s hospitals in the nation for Cardiology & Heart Surgery by U.S. News & World Report.
