As a labor and delivery nurse at Union Hospital in Dover, Ohio, Sarah Gwyer has lots of experience with babies. But nothing in her training prepared her for all she would face after the birth of her second child.
Sarah and her husband, Zach, were already parents to 3-year-old Chloe when they learned she was pregnant. They were over-the-moon in December 2013 to discover at Sarah’s 19-week ultrasound visit that they would have a second daughter.
“Three weeks later my world came crashing down when a follow-up ultrasound revealed the baby had something wrong with her heart,” said Sarah. “My nursing background couldn’t help me in this situation. I was at the mercy of the unknown.”
Diagnosed with rare series of heart defects
Lucky for Sarah the fear of the unknown didn’t last long. After scheduling an appointment with Dr. C.R. Patel, director of maternal-fetal cardiology at Akron Children’s Hospital, she learned that her unborn daughter had aortic atresia, a hypoplastic ascending aortic branch and a large ventricular septal defect (VSD).
“Dr. Patel said her defects were rare, but it was a good kind of rare,” Sarah said.
The plan was to get Sarah, who was still working full time, to 37 weeks gestation so the baby could be safely delivered.
“It was a waiting game,” said Sarah. “Working helped keep my mind busy.”
On May 19, 2014, Charlotte Gwyer was born via C-section and was immediately transported to the neonatal intensive care unit at Akron Children’s.
“I couldn’t hold her or touch her,” Sarah said. “That part was hard.”
Charlotte went into heart failure and had to be sedated, intubated, and placed on a paralytic, a medication that causes such extreme muscle relaxation that most muscles of the body are unable to move.
The Gwyers were able to take advantage of free overnight accommodations in the hospital’s Reinberger Family Center, and later the adjacent Ronald McDonald House, allowing them to remain close to their daughter during her NICU stay.
Fixing Charlotte’s heart
At just 8 days old Charlotte underwent a modified Norwood procedure where heart surgeons repaired her hypoplastic aorta and inserted a shunt to control blood flow to her lungs.
After surgery, Dr. Philip Smith, one of Charlotte’s cardiovascular surgeons, sat down with Sarah and Zach to go over the successful surgery.
“What I love about Akron Children’s providers is they always took the time to ensure we fully understood what was being done and we were comfortable with everything. They were extremely patient and answered all our questions,” Sarah said. “The rapport I observed between Dr. Smith and Charlotte’s other surgeon, Dr. Michael Spector, as well as all the nurses and other staff responsible for the congenital heart defect patients was wonderful. It really was a team effort.”
After spending the first 26 days of her life at Children’s, Charlotte was discharged with an NG tube and oxygen the Friday before Father’s Day.
“It was the best gift ever to have her home, but it was also overwhelming because Zach had to go back to work,” said Sarah. “I was also trying to nurse and pump and take her back to Children’s every week for appointments.”
Just when Sarah was starting to get into a comfortable routine, Charlotte suffered a setback. In August she was transported from Union Hospital to Akron Children’s on Air Bear, the hospital’s medical transport helicopter.
A heart catheterization revealed scar tissue had grown, causing a narrowing that was making her heart work too hard. A quick fix had them discharged the next day.
Due to Charlotte’s complex medical needs, Sarah decided to take an extended leave from her job so she could stay home and care for her daughter.
“I reached out to Children’s palliative care and social work departments for help finding resources with back-up insurance and other needs,” said Sarah. “They were wonderful to our entire family. We felt very cared for.”
In March 2015 Charlotte returned to Children’s for another heart surgery.
“At this point we had grown so close to our care team it was like handing her over to family,” said Sarah.
Drs. Smith and Spector closed Charlotte’s VSD and performed a Rastelli procedure, which involved removing her shunt and replacing it with a right ventricle to pulmonary artery conduit using a bovine graft and valve. Charlotte will have to have this conduit replaced throughout her life as she grows.
Now a typical toddler
Sarah has learned to appreciate even the smallest improvements.
“Today she is 14 months old and is walking, talking, eating solids, using sign language and exhibiting her feisty personality,” she said. “Except for her scar, you wouldn’t know anything was ever wrong with her.”
Sarah is at the point where she is getting more comfortable with the thought of returning to work.
In June of this year she was a featured speaker at the American Heart Association’s Heart Ball in Akron, and also at Children’s own Heart Walk. A Facebook page dedicated to Charlotte’s journey has attracted other families who have reached out to Sarah for advice.
“I would love to be a parent mentor someday,” Sarah said. “”I’ve learned so much from this experience. It’s very fulfilling to be able to help others.”