Pediatric Cardiology Patient Nathaniel Day
Nathaniel Day, 5 ½, finds the halls familiar and the smiling faces
welcoming when he makes his semi-annual trips to Brenner Children's
Hospital.
There, his doctor, Amanda Cook, checks up on his heart.
When
Nathaniel was born, his parents, Leanna and Matthew Day, already knew
that their baby would need immediate surgery. Doctors at Brenner had
discovered a congenital condition, pulmonary atresia, during his
mother's pregnancy. Nathaniel's pulmonary valve, which allows blood to
move into the lungs to pick up oxygen, had developed improperly. The
defective valve blocked that passage of blood.
Leanna, who had
given birth to a healthy boy five years before, was happily awaiting the
birth of her second when she went for her 20-week checkup. But when
tests showed a problem with the baby's heart, a pall fell over the
family.
"The rest of my pregnancy was pretty terrible," Leanna
said. She worried about the defect, about the surgeries her son would
need, about how different his life would be. After the initial discovery
of the defect, doctors told the Days, who live in Greensboro, to wait
two weeks, go to another hospital and confirm the defect.
The
news remained the same, and the Days heard words that lay heavy on their
hearts. Doctors told them they could choose to abort the baby.
"I'm
sure they have to say that," Leanna said. "But I had already had the
ultrasound, I had already felt the baby move. We loved this child and
were committed to him." She also took issue with being told that if she
chose to continue the pregnancy, labor would be induced at 37 weeks.
"It was all on their schedule," she said.
The
Days looked for a hospital with a better "fit," and they chose Brenner.
Doctors there said they would do everything they could to help Leanna
carry her baby as long as possible so that he would be big enough to
undergo surgery within a week of his birth.
Nathaniel Day was
born on Oct. 25, 2004, nearly at full term and weighing 5 pounds, 8
ounces. Three days later, doctors inserted a shunt, a tube that would
allow some oxygenated blood to flow through his body. The temporary
repair would keep him going until they could insert a donor heart valve
to replace the one he was missing and close the hole in his heart.
The
Days took their boy home, where their lives revolved around taking care
of him. Leanna pumped breast milk and fed him with a bottle because the
strength it took to nurse overworked his heart. If he cried too much,
he could pass out. So the Days took turns holding him through the night
so he wouldn't fuss.
They kept Nicholas, their older son, out of
preschool so that he wouldn't bring germs home, and Leanna remained
homebound because she couldn't take Nathaniel out.
At 5 ½ months, Nathaniel underwent his second surgery, receiving a donor valve.
The
caring and dedicated staff at Brenner eased the stress that the Days
were under, Leanna said "It is their agenda, in a way, just taking into
consideration the families' needs. It makes you realize that they
understand what you're going through and that you're not just a
patient."
After his surgeries, Nathaniel rebounded and started to
become the healthy child he was meant to be -- sweet, friendly and
active. He loves trucks and trains and tractors and playing with his
brother.
Last summer, Nathaniel needed another surgery to widen
his arteries and replace his original donor valve with a larger one. His
mother spent nights in his room in the hospital’s pediatric intensive
care unit, and when she mentioned that she wished she could lie next to
him and hold him close, a nurse moved all his wires and tubes so that
she could.
"That brought tears to my eyes," Leanna said. "All I wanted to do was be beside my baby and hold him."
The
Days don't know how long the newest valve will last. "How long each
child keeps a valve is different," Leanna said. "Some keep them for
several years – some outgrow it."
The Days try not to think about more surgery as they visit Brenner every six months for Nathaniel's checkups.
"We go doctor visit to doctor visit," Leanna said. "We just enjoy and cherish the time we have with him.”