Parents dream of raising healthy children.
For James Davy, of Iola, there have been many obstacles to a healthy life for his son Jayden.
Jayden’s journey through life had only just begun when his family learned he was born with hypoplastic left heart syndrome, where the left vertical is severely underdeveloped along with the aorta.
“After the doctor explained what it was, it was devastating,” said Davy. “Online research and meeting with the people at the hospital in Milwaukee reassured me that Jayden would be able to live and be OK.”
Jayden underwent three surgeries in his early childhood to reconstruct his heart, but he still needed a new heart and was placed on the transplant list.
Jayden’s father recalled the day that the family heard the news.
“I was actually in the hospital when they came up and told me they had a heart for Jayden,” said Davy. “I was in shock for some time. I went out of the room to make some phone calls and I broke down.”
He describes the process as an emotional roller coaster.
“There are risks with everything and we were always told that, but I think at times you’re always thinking, he’s going to be fine and that nothing can happen to my kid,” he said. “I guess I always stayed positive and knew Jayden was a tough boy and he could get through it.”
On July 16, 2013, after more than 10 hours in surgery, 4-year-old Jayden received a new heart.
Immediately following the transplant Jayden stayed in the hospital for 10 days, where he went from heavy sedation to waking up with drainage tubes and still on the ventilator to assist his breathing.
“Those moments following surgery were very tough,” said Davy. “But with each day comes a better day and he was already starting to be himself after just a couple days.”
Almost two years after Jayden had his transplant, he needed to return to the hospital on Dec. 26. 2014.
The 6-year-old is now waiting for a second heart.
“He has been having problems with his heart rate being high all time since shortly after his first transplant,” Davy said. “The doctors had tried many medications to treat it but nothing had worked.”
Jayden suffered a cardiac arrest on Jan. 19.
“The cardiac arrest put too much strain on his heart, and it is not going to recover,” said his father. “He has gone through this process before and he asks more questions about why he’s sick and why he already got a ‘new heart’ and why he would need another one.”
Jayden and his family were now faced with a transplant assessment to make sure he was still a good candidate for another heart.
“They do many tests to make sure that he is healthy enough to get a heart,” said Davy. “They have strict requirements to make sure that if a heart is available it is going to a child that will do well with it.”
Jayden was placed back on the transplant list on Feb. 2.
According to Davy, raising a child with health issues becomes second nature.
“I think that even as rare as Jayden’s case is, he still lives a fairly normal life,” Davy said. “As a child he was always in and out of the hospital but still managed to go to daycare and some 4k schooling. This past year, Jayden started kindergarten. He was actually doing well, enjoying himself, making new friends and learning new things every day. I believe that once he gets his second transplant that life will hopefully settle down and go back to him being a normal boy enjoying everything a normal kid does.”
The experience with his son has taught Davy the importance of being an organ donor.
“I wasn’t an organ donor until this came up,” he said. “I never realized the importance of being a donor. You can save so many people not just with major organs but also eyes, skin and tissue. I understand different beliefs, but also encourage people to think that their loved one can live on and help someone else survive.”
Although transplant recipients do not know who donated their organs, Davy reaches out to all those families who have touched the lives of others.
“I would thank them for their child’s gift and the new life it has brought to my son,” he said.
Per request of the family, anyone wishing to make financial donations is asked to contact the Children’s Hospital of Wisconsin and donate directly to the facility.
“They are the real hero’s here,” Davy said. “The doctors and nurses have helped in every way possible to make Jayden’s life in the hospital as easy as possible and also his continued life outside of the hospital.”
Davy’s hope is that donations would go to help fund research to discover why children have congenital heart disease.