For fetal cardiology patient, Norton Children’s Heart Institute team ‘became family’

“I couldn’t have asked for anything better,” Kaitlyn Goff said. “All the nurses, the surgeons, and everyone else supporting us — they became family.”

After trying to get pregnant for five years, Kaitlyn Goff of Nelson County, Kentucky, couldn’t have been more excited to welcome her baby boy into the world.

Norton Children’s Heart Institute

Our team of surgeons and other specialists treats all types of congenital heart defects, from before a baby is born through adulthood.

At that point, she knew something was wrong, and doctors confirmed her baby had a heart defect.

“It was heartbreaking,” she said.

“We finally got pregnant,” Kaitlyn said. “Then, during my 20-week scan, they kept taking pictures of the baby’s heart.”

Specialists with Norton Children’s Maternal-Fetal Medicine recognized the cardiac abnormality and referred Kaitlyn to Norton Children’s Heart Institute, affiliated With the UofL School of Medicine. Then a fetal echocardiogram confirmed the baby’s diagnosis: complex single ventricle with tricuspid atresia and hypoplastic right ventricle.

Following the diagnosis, the family met the team at Norton Children’s Heart Institute to better understand Colton’s condition and outline a course of care. This “meet the team” process, available for all prospective patients, helps families become familiar with their providers and have a greater understanding of the type of care they can expect, including any procedures, surgeries and recovery time.

During this visit with the Norton Children’s team, the family met with:

  • Bahaaldin Alsoufi, M.D., pediatric cardiothoracic surgeon and director of pediatric cardiac surgery at Norton Children’s Heart Institute
  • Allison K. Black, M.D., pediatric cardiologist with Norton Children’s Heart Institute
  • Jonathan R. Malowitz, M.D., neonatologist with Norton Children’s Neonatology, affiliated with the UofL School of Medicine
  • Mary K. Sandquist, M.D., pediatric critical care physician with Norton Children’s Critical Care, affiliated with the UofL School of Medicine
  • Stacie Hartlage, R.N., nurse navigator with Norton Children’s Heart Institute
  • Ashley J. Rhinehart, APRN, single ventricle coordinator and pediatric cardiology nurse practitioner with Norton Children’s Heart Institute

This visit also includes a tour of the hospital to help make a stressful situation more familiar.

After meeting the care team, the Goff family knew Norton Children’s Heart Institute was the place they wanted their baby to be treated. “I couldn’t have asked for anything better,” Kaitlyn said. “All the nurses, the surgeons and everyone else supporting us — they became family.”

In June 2022, baby Colton was born six weeks early. He remained in the Norton Children’s Hospital neonatal intensive care unit for nearly two weeks and stayed in the hospital’s Jennifer Lawrence Cardiac Intensive Care Unit for an additional six weeks.

For this first-time mom, it was the scariest time in her life. Colton underwent two surgeries. Since he was premature and had a very small weight, his first operation was pulmonary artery banding, followed a month later by a Norwood procedure performed by Dr. Alsoufi.

“We didn’t see him for the first 10 hours he was born, and weren’t able to hold him for days and weeks,” she said. “We are so thankful for Dr. Alsoufi and his surgical team. It  was so hard for me to give my son to someone I didn’t even know to save his life, and to perform what he did with a heart that was a size of a grape was truly amazing.”

During their time with Colton in the hospital, the family was surrounded by support from their care team and even formed a special bond with Ashley.

“There are no words; she’s just wonderful,” Kaitlyn said. “She is always there for support, and if you have questions or need anything, she will get back to you in a heartbeat.”

According to Kaitlyn, Dr. Black also went above and beyond to support the new mom during such a stressful time.

“Dr. Black was always checking on us,” Kaitlyn said. “She was a great support person, looking out for my well-being when I was going through everything, because I wasn’t thinking about myself at all during that time.”

Colton is doing well at home after recovering from his third heart surgery — a Glenn procedure — in January 2023. He will have to undergo another heart surgery when he is between 3 and 6, and his mom continues to trust the team at Norton Children’s.

She encourages other families who may be on a similar journey to seek pediatric cardiology care at Norton Children’s Heart Institute.

“The care is fantastic. I would always recommend that place,” she said. “They’re too amazing to go anywhere else.”