Baby with Down syndrome facing congestive heart failure saved by ‘phenomenal care’ at Children’s Hospital of Georgia

Erin Nobles of Washington County, Georgia, was 11 weeks pregnant when her OBGYN said her child had a 90 percent chance of having Down syndrome.

Nobles recalled a feeling of shock upon learning this — even more so than when she found out 25 weeks along that her daughter had a large atrioventricular (AV) canal defect, a large hole in the center of her heart. The bottom two chambers of her heart could not be located on an ultrasound.

“They said she would have to have open heart surgery before 4 to 6 months of age,” Nobles said.

Her daughter Gracie Nobles was born last spring at Children’s Hospital of Georgia and almost immediately went into congestive heart failure.

Nobles met with Dr. Anastasios Polimenakos, director of pediatric and congenital heart surgery, soon after Gracie was born.

“We are intimately involved before surgery,” Polimenakos said, describing the approach of the Children’s cardiology team. “We engage them, so they know the plan is well-thought out.”

Weeks went by as Gracie was cared for in the Neonatal Intensive Care Unit (NICU) and then the Pediatric Intensive Care Unit (PICU).

“She was doing very poorly,” Nobles said. “But we received the best care you could possibly imagine in that NICU. Her doctors were the best of the best.”

Gracie’s kidneys were also not functioning at the levels they needed to be.

“They really wanted us to wait for her kidney numbers to get to a certain level,” Nobles said. “For weeks they tried everything and nothing was working.”

But suddenly, after nearly two months in the NICU and two cancellations, her medical team saw a breakthrough and decided Gracie was ready to go into surgery. Leaders from the Nobles’ family church came to pray for Gracie just before the operation.

Nobles, a nurse practitioner herself, was nervous as any mother would be, but trusted the medical professionals at Children’s.

“I think this family showed exactly what we admire about a lot of these heart families, which is that the family completely stepped up,” said Lauren Mathis, a nurse practitioner who works with Polimenakos.

“Lauren is very instrumental in making the family feel comfortable,” Polimenakos said.

Gracie’s lengthy hospital stay inspired her family to advocate for other children in her situation.

“Gracie had a different course than most of our kids — most with Down syndrome can go home and do well and come back for surgery. But Gracie had some more difficulty leading up to it. She’s been a prolonged case in the hospital. Before we were able to move forward with surgery, she needed to gain weight and she needed to do a lot of things — and I think it just inspired this mom to get out there,” Mathis said.

“After the surgery, she wanted to advocate for kids with Down syndrome, and being able to get organ transplantation and not be discriminated against just because they have Down syndrome, and I think it inspired her.”

To that end, Nobles and her husband David Nobles are pushing for new legislation in Georgia called “Gracie’s Law,” which would prevent discrimination against the disabled for organ transplants.

In the meantime, Gracie is “at home and she’s thriving. She’s doing great now,” said Polimenakos.

Nobles has seen improvements every day, as Gracie approaches her first birthday.

“It was really a miracle. She’s meeting most of her milestones,” she said. “Dr. Polimenakos turned us loose after two or three months. She still has a G-tube [gastrostomy tube, which delivers nutrition through the stomach], so we’re working on that. I tell everybody to go to the Children’s Hospital. We got the best care imaginable. That cardio team was the cream of the crop, truly.”