Like many young couples, Mark and Jennifer Knepper, of Streetsboro, looked forward to starting a family. When their first child, Olivia, was about 1 year old, they found out Jennifer was pregnant with identical twin girls.
This pregnancy, however, did not go smoothly.
Jennifer developed pre-eclampsia, a potentially dangerous complication of pregnancy, and was hospitalized at 31 weeks.
A Caesarean section was scheduled at 32 weeks, yet the day before, Jennifer and Mark lost one of the twins to a feto-maternal hemorrhage, a condition where blood from the fetus leaks into the mother’s bloodstream.
Because of the risk to the surviving twin, she had to be delivered right away.
Ainsley was born on Dec. 29, 2010, and immediately transported to Akron Children’s Hospital’s neonatal intensive care unit (NICU). The biggest issue facing the preemie was her under-developed lungs.
Although she started out strong, there would be setbacks as Ainsley’s breathing continued to deteriorate, said Jennifer.
Eventually she had to have a tracheotomy and was dependent on a ventilator to help her breathe. She also had a feeding tube.
For the Kneppers, the next 16 months would be spent at Akron Children’s as they helped their baby fight to survive.
Throughout the ups and downs of Ainsley’s illness, Akron Children’s Haslinger Family Pediatric Palliative Care Center was there.
“They really served as our go-between and our voice with the rest of the staff,” said Jennifer. (Besides 13 months in the NICU, Ainsley also spent 3 months in the pediatric intensive care unit at Children’s.)
“It was very overwhelming and Marlene (Marlene Hardy-Gomez, a pediatric nurse practitioner on the palliative care team) was really good at anticipating what we needed, even before we knew it,” said Jennifer.
Palliative care staff also helped the Kneppers sort through the vast medical information they were receiving throughout their daughter’s care.
“Ainsley was handled flawlessly in the hospital. When the time came, the palliative care team helped her pass peacefully,” said Jennifer. “They were so caring and proactive, and did everything possible to help us.”
As they were preparing to say goodbye to one child, the Kneppers were also preparing for the birth of another.
When Ainsley was 9 months old, they found out that Jennifer was pregnant. Throughout the pregnancy, the palliative care staff made sure Jennifer was comfortable while she was at Ainsley’s bedside every day.
Ainsley passed away on May 12, 2012, and 2 weeks later on May 29, Adelle was born. It was a bittersweet time for the Kneppers as they said goodbye to one daughter and welcomed another.
“At that point, we were in survival mode and focused on moving forward,” said Jennifer.
The Kneppers no longer make daily visits to Akron Children’s and have settled into a new family routine with their young daughters, who, like Ainsley, have brought them so much joy.
Despite everything they have been through, they have many good memories of the days when Ainsley was doing well – smiling, laughing and happy in spite of being so sick.