During Caroline’s first surgery — just five days after she was born in mid-January — her parents and three siblings stayed in the Ronald McDonald house near Children’s Hospital of Philadelphia (CHOP). Her second surgery, however, occurred in August, smack in the middle of the COVID-19 pandemic. “I knew it would be different,” says mom, Emily. “I had no idea how different.”
Prenatally diagnosed with a heart defect, duodenal atresia and possible Down syndrome, Caroline was delivered via C-section in the Garbose Family Special Delivery Unit (SDU) at CHOP — the world’s first birthing facility designed specifically for healthy mothers carrying babies with known birth defects.
At just 5 days old, Caroline had her first surgery to correct duodenal atresia — a condition that occurs when a portion of the duodenum doesn’t form and results in a blockage preventing food and fluid from leaving the stomach — with William H. Peranteau, MD, performing. On the cusp of the pandemic, Emily, her husband and their three older children stayed in the Ronald McDonald House with easy access to CHOP via shuttle. During this time, Emily remembers eating meals in a large dining room, where she had the opportunity to connect to other families whose children were also in the hospital.
“That’s what I missed the most,” says Emily, noting that as COVID-19 concerns began to heighten, group dining at the Ronald McDonald House was eliminated. “I missed the connection.”
Separated by the pandemic
It soon became clear that Caroline was not able to orally take in the nutrition she needed and was not yet able to go home. With visitor restrictions in place and siblings no longer able to stay in the Ronald McDonald House, Emily’s husband and her children returned home to Va. Emily would stay in Philadelphia with Caroline until mid-March, when Caroline was finally ready to go home.
Worried about Caroline’s heart condition, the family stayed in quarantine in Va. until August, when it was time to return to CHOP for Caroline’s second surgery — repair of her atrioventricular (AV) canal defect, a hole between the heart’s chambers and problems with the valves that regulate blood flow in the heart.
Well into the pandemic with strict safety measures in place at CHOP, including visitor restrictions, Emily’s parents came to stay with her older children so that she, her husband and Caroline could make the 4-hour trek alone to Philadelphia for what they thought would be a 10-day stay.
Emily says that she was more fearful of Caroline’s looming surgery than she was of the pandemic. With everyone in the hospital wearing masks and practicing physical distancing — including strict limits on elevator capacity — Emily knew her family was safe. “I never felt worried at CHOP,” she says.
A new challenge
Caroline’s surgery — performed by Stephanie Fuller, MD — was largely successful, with some residual valve regurgitation.
Just before the family thought they would be transitioned to the hospital’s stepdown unit, however, Caroline began to have trouble breathing. A cardiac catherization confirmed pulmonary hypertension (high blood pressure in the arteries to the lungs). While this condition can occur with AV canal defect and is readily treatable with medication, determining the right dose takes time and observation.
Once again, Emily remained in Philadelphia while her husband returned home to care for their other children. During this time, Caroline underwent placement of a gastrostomy (GT) feeding tube for nutrition management, and was also diagnosed with sleep apnea, requiring the ongoing use of a CPAP machine.
Emily missed the opportunities for connection once available in the Ronald McDonald House, but the relationships she developed with several nurses more than made up for it. With family and friends unable to visit due to the pandemic, Emily looked forward to daily visits from the nurses, including one nurse who decorated Caroline’s closet, which Emily loved filling with cute, seasonal outfits for her baby.
“Some things have changed because of the pandemic,” Emily says.
“But what hasn’t changed is the level of care and compassion of the nurses and clinical team.”
Dr. Fuller echoes the immense contribution of the nursing staff, especially during the pandemic. “Families are so grateful for the nurses and the bedside support,” she says. “When parents can’t have visitors in their rooms, the staff on these floors become like family.”
Happy at home
By early October, with Caroline’s medicine regime in place and feedings going well, Emily was finally able to take her baby home. In partnership with the local community, CHOP will continue to provide Caroline’s follow-up care. She is followed by a Va. cardiologist and receives other local support services.
Now 8-months-old, Caroline continues on medication, including a diuretic to help with fluid build-up; she sleeps with a CPAP machine; and receives feeding, respiratory and physical therapies.
Despite these challenges, Emily notes that Caroline is a very “easy” baby. “She’s the sweetest,” says Emily. “Her smile is so big that it lights up the room.”