“We don’t get many children. Occasionally young adults. I’ve been in this role almost 10 years and we’ve had only two or three children since I started. This is the first time we’ve had one this little here,” Hospice Supervisor Rebecca Crampton says.
At the end of May, the UnityPoint Health – Fort Dodge hospice team anxiously started caring for 4-month-old McAyla Saperna. The baby girl was born January 5 and spent much of her first few months at a Children’s Hospital in Omaha, Nebraska before transitioning to a hospice program to provide comfort measures.
“The baby’s primary diagnosis was meningitis. She also suffered a stroke. The stroke also caused McAyla to lose some muscle tone in her body and in the larynx, which caused difficulty breathing, especially when she was laid a certain way,” Crampton says.
The team at the hospice home knew it was their calling to help the family.
“It’s what we do. We talked about it as a team, and they needed us. A lot of time we don’t know it, but we need them too,” Nurse Cynthia Ellsbury says.
However, the whole hospice team felt nervous about caring for a baby, because they weren’t used to it. There was a lot to review…and fast.
“Working with babies and doing things with nasogastric tubes (a tube placed from the nose to the stomach for feeding) is not something we do very often in hospice. Before McAyla arrived, I set up online learning courses for the team through our education department as refreshers,” Crampton says.
The team didn’t only have to mentally prepare for the baby, they had to physically prepare the facility. That included getting a crib, baby hospital gowns, suctioning bulbs and even infant-sized blood pressure cuffs from the hospital. There was another obstacle too – a language barrier. But it wasn’t anything the team couldn’t handle.
“We were able to use our interpreter at times, but Pohnpeian isn’t a very well-known language. It’s spoken on small islands including those off the U.S. mainland like Hawaii and Guam. Not very many interpreters speak it, so it was difficult to get someone on the phone to help us,” Crampton says.
“Since mom, Merlain, didn’t have a vehicle here, everyone took her under their wings. The nursing aides got creative and went online to print out pictures of different foods, and she’d point to things she liked; we used the grocery ads, too. She circled what she wanted, and we’d get groceries for her,” Ellsbury says.
Merlain was at the hospice house 24/7 to be with her baby. The care team says at first, mom was very reluctant to help with the baby’s extensive care needs. But then things changed, and she wanted to do everything herself. The team loved watching mom and baby become very attached.
“As time progressed, the baby gained strength, and the baby would turn her head toward the noise and she’d catch her mom’s eye. They really started to bond. I remember one time when the baby cried – she didn’t even cry at first – and her mom picked her up, touched her nose and buried her in her arms. It was so special to be a part of that moment,” Ellsbury says.
Due to COVID-19, Merlain never left her baby’s side. Merlain’s husband, Ketson, stayed at home with their other young child. Since there was over an hour between the family’s home, the hospital and the hospice house, the family didn’t see each other for months. However, Merlain did leave for one special weekend.
“The team pitched in money to buy a bunch of toys – baby dolls, coloring books, bowling pins – and wrapped it all up, and the couple took it home to have a birthday for their 2-year-old daughter. The mom got to go home for the weekend. And we were happy, because we got to hold the baby a lot that weekend!” Ellsbury says.
Finally, the family decided they wanted to work toward getting everyone under one roof.
“We went from fear, to falling in love with them, to crying when they left. We’re happy they got to go home and be together. But we have a hole in our hearts that they are not with us,” Ellsbury says.
Two UnityPoint at Home nurses are checking in on the family several times a week. They are all relieved and happy to have everyone together for the first time since the baby’s birth in January.
“We are so grateful she is here,” says Ketson Saperna, the baby’s father. “She is a strong survivor.”
The baby's older sister is enjoying getting to know her, since she didn’t see McAyla in the hospital or in the hospice house.
“She loves her and wants to play. We have to be careful she isn’t too rough,” Saperna says.
And at just a few months old, little McAyla is already changing lives for the better.
“We learned so much about the hearts of each other, about loving people, about meeting people’s needs and about the ultimate joy and payoff in doing what we do,” Ellsbury says.