When it came time to plan a party to celebrate her daughter Adeline’s second birthday, Deborah (Deb) A., didn’t take long to decide on a theme. It had to be, without a doubt, a Tinkerbell party.
“Adeline watches the Tinkerbell movie at least once a day, and she has to watch it through the credits because she likes the music that they play,” shared Deb. “She absolutely loves it. She has Tinkerbell toys, Tinkerbell everything!”
For Deb and her husband Tom, something as ordinary as having friends and family to their home for a birthday party for Adeline was something they never thought would be possible. Born with a rare disorder that created a large hole in her diaphragm, causing all of her internal organs to migrate into her chest cavity, Adeline’s tiny body left no room for her lungs to form properly. The baby spent the majority of her young life in the hospital. Today, thanks to her home care nurses from BAYADA Pediatrics, Adeline can live safely at home, where she is thriving.
A rare and unexpected diagnosis
The couple first learned of their daughter’s condition during Deb’s pregnancy, when an ultrasound at 20 weeks revealed some troubling news.
“The doctor told us that Adeline appeared to have a congenital diaphragmatic hernia,” Deb explained. “They only gave her a 60 percent chance of surviving. Our hearts sank.”
A few weeks after her birth at The Children’s Hospital of Philadelphia (CHOP), Adeline had surgery to repair her diaphragm and move her internal organs where they should be. However, the baby continued to face challenges. “Her eyes couldn’t focus on anything, and she had extreme feeding difficulties which required a feeding tube,” said Deb. “We consulted with the CHOP genetics team, and that led to another diagnosis of Coffin-Siris syndrome. It’s very rare; there have only been about 200 documented cases since the 1970s.”
Adeline spent the next 10 months in the Neonatal Intensive Care Unit (NICU) at CHOP. When they were finally told that their baby could be discharged, the couple was excited, but worried about the unknowns of what life would be like at home.
Discovering the world of home care nursing
“It wasn’t until she started getting closer to her discharge that we even started talking about home care” said Deb. “It just never even crossed our minds. I never knew about nurses in the home. I never knew that this whole world even existed.”
The Acernos signed on with a home care agency, but unfortunately, Adeline’s stayed at home for only five weeks, as ongoing complications led to another hospital admission, which lasted about six months. This time, Deb and Tom were better educated about home care, and they insisted on using a different agency. When the time came to bring Adeline home again, they chose BAYADA Pediatrics.
Before Adeline’s discharge, BAYADA Transitional Care Manager Mary Simrell, RN, worked with the local BAYADA Pediatrics office to ensure the baby would have a smooth transition from the hospital to home. Deb, who sat in Adeline’s room all day, every day for months, appreciated Mary’s visits.
“Mary stopped by pretty much every day to check in,” shared Deb. “She really cared about not just Adeline but about Tom and me. Her constant presence made me more comfortable with the decision to choose BAYADA.”
Advanced training brings peace of mind
Once they were home with Adeline, Deb and Tom welcomed the BAYADA nursing team into their home 16 hours a day. Deb was so impressed with their high-tech skills, giving her the reassurance that she made the right decision in choosing BAYADA.
She recounted how a frightening incident on the way to a therapy appointment was calmly and expertly handled by one of Adeline’s nurses: “We were in the parking lot ready to take her out of the car when one of her oxygen tanks malfunctioned,” shared Deb. “Adeline is very dependent on oxygen, so it could have been a huge emergency. But the nurse knew what to do, and Adeline was ok. When I asked her later how she knew how to handle the situation, she said she had done it multiple times in her training.”
The gift of family time
Home care has also given Deb and Tom a priceless gift: the ability to just be a family. “While the nurses focus on keeping Adeline safe and healthy, Tom and I get to be typical parents, playing with our daughter and watching her grow and learn.”
Throughout their journey, Deb and Tom have learned to be patient and give themselves the time needed to adjust to their new normal. “When you have a sick child, you are adjusting to a life that you never knew existed. A life where you never thought there would be nurses in your home all of the time,” said Deb.
Fortunately, Deb and Tom have developed close relationships with Adeline’s nurses, and they are grateful that the care team from BAYADA has allowed their daughter to come home, instead of spending her life in the hospital.
“She needs the type of care that can only be provided by a nurse,” said Deb. “And her nurses are the reason she can thrive at home.”
They also bring a sense of normalcy, so Adeline and her family can enjoy the simple pleasures of life—like a Tinkerbell party to celebrate her second birthday.