WOODBINE – If good things come in small packages, the best present for Katelyn Bill and Dan Hamilton this Christmas would bebringing 4-month-old Abigail (Abby) home to Woodbine from the Children’s Hospital of Philadelphia (CHOP).
Before that can happen, they need to find nursing staff to care for her at home for two weeks.
Abby has congenital central hypoventilation syndrome (CCHS), a rare lifelong and life-threatening disorder. It requires a tracheostomy and ventilator for breathing. Because there is a nursing shortage, they haven’t been able to find anyone willing to take on those duties.
“Our search has been like a roller coaster, with its up and downs,” said Bill. “We have posted our need on social media and have been working with a variety of health care agencies to find a nurse who either has this special skill and knows how to work with a ventilator and trach or is willing to be trained.
“So far, we are going on nine weeks waiting for nursing to come together, so our baby girl can come home,” Bill added. “It would be really nice to bring her home for Christmas.”
Anyone qualified to care for Abby, and interested, should contact 609-601-2200.
CCHS affects the involuntary breathing process, especially at night, according to Hamilton. “The body doesn’t breathe,” he said. “The hospital is requiring us to have a nurse for two weeks, especially at night, to help us adjust to her being home and to make sure she keeps breathing, especially at night.
“After the two weeks, she will need to be monitored 16 hours a day, and it will lessen over time depending on how she does,” Hamilton said.
About 1,300 people were identified with CCHS worldwide, Bill said, and it may not be before Abby’s fifth birthday before they know how severe and whether she will need a machine like those used by people with apnea, to help breathe, especially overnight, for the rest of her life.
Bill noted that Abby is a twin, but brother Oliver is home with sisters Carly, 15 months, and Aubrey, 6. During her pregnancy, she said medical staff noted it took Abby “a bit longer to practice breathing” when they performed ultrasounds, but they didn’t know how serious the condition was.
“It was mostly a surprise,” Bill said about Abby’s diagnosis.
“It was pretty scary,” added Hamilton.
Because of COVID-19 precautions, Bill and Hamilton have been juggling overnight stays at the hospital with Abby with responsibilities at home caring for her three siblings.
“Dan (Hamilton) goes to work, and then we take turns staying overnight at the hospital,” Bill said. “We are being extra cautious because of COVID-19, but it’s been tough.”
Hamilton’s parents live nearby, she said, and have been helping, as well as friends and neighbors.
According to The American Nurses Association (ANA), the nursing profession continues to face shortages due to a lack of potential educators, high turnover, and inequitable workforce distribution. It predicts more registered nurse jobs will be available through 2022 than any other profession in the U.S.
According to a recent study (https://bit.ly/380b0q5), the U.S. Bureau of Labor Statistics projects that 11 million additional nurses are needed to avoid a further shortage.
Employment opportunities for nurses are projected to grow at a faster rate (15%) than all other occupations, from 2016 through 2026.
To contact Karen Knight, email kknight@cmcherald.com.
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