April was National Donate Life Month, and Josh and JJ New can tell you exactly why that’s important.
When their son Zach was only six weeks old, he received a donated pulmonary aorta that helped save his life. Because a grieving family made the difficult decision to donate their baby’s organs and tissue, Zach is healthy today and preparing to graduate from Wylie High School in a few weeks.
“The miracle of organ donation is a true miracle,” said his mother, JJ, who is a nurse and has a special understanding of the importance of donation both as a medical professional and as a parent.
Josh and JJ were in the military and living in North Dakota when Zach was born.
“When he was born, they said he had a murmur,” JJ said. “I am a nurse, and I knew it wasn’t uncommon. But the next day, his pediatrician said it’s not a normal murmur.”
One day after Zach was born, he was flown to a hospital in Colorado. Josh went with him, but JJ had to stay behind to recover from a C-Section.
“It was terrifying,” Josh said. “I still get emotional. I remember asking the doctor straight up is my baby going to die. It’s tough because I held him, we bonded and I didn’t know if we were going to get to keep him.”
In Colorado, they were told he had a coartaction of the aorta – a narrowing in the arch of his heart. At 8-days old, he had surgery to widen it. They thought that was it.
The military moved them to Lackland Air Force Base where Zach had a follow up appointment at six weeks old.
“We had a follow up with a cardiologist there,” JJ said. “She was like he’s not OK. We went in for a cath, and that turned into the next day an open heart surgery. I don’t remember them telling us specifically that he would have donated tissue. They weren’t sure until they got in there what would be needed.”
Doctors used the donated pulmonary aorta to widen the arch in Zach’s heart.
“I don’t really remember focusing on oh my gosh he had donated tissue until they gave us the little card,” JJ said.
She said that donated tissue goes to a tissue storage facility and has a donor number. The card they were handed had the donor’s ID number and a phone number to call for more information.
“When I called and gave them the number, they said this family doesn’t wish to know,” JJ said. “They were able to tell us that it was a 6-week old baby that died in a car accident in Wisconsin.”
JJ said she sent in a letter just in case the family changed its mind, but they have never heard from the donor’s family.
“I don’t know how I would feel if I would meet them,” JJ said. “How do you express gratitude for something like that? Even writing the letter was hard.”
“You feel selfish that mine is here and yours is not,” he said. “Thank you would never be enough.”
Today, Zach is healthy and other than going to annual checkups, he has had very few restrictions on his activities. He can never be a power lifter, but the doctor said he could play football if he wanted. He wasn’t interested.
He did however play baseball and basketball when he was younger. He wore a compression vest during baseball to avoid a direct impact to the chest. Zach said the only time it was an issue was once when an umpire questioned the compression shirt under his jersey thinking it was jewelry. He told Zach he would have to remove it.
“Mom heard that,” Zach remembered with a laugh. “All I hear from the back of the stands is my mom yelling, ‘He had a heart condition. He has to wear it.’ He backed off.”
Zach said the magnitude of organ donation didn’t hit him until he got older.
“It never really crossed my mind until I was asked if I wanted to be a donor myself,” he said. “I wouldn’t be here necessarily if someone hadn’t made that decision, so I figured I should do it myself.”
Both Josh and JJ try to tell their story to support organ/tissue donation whenever they can, especially during Donate Life Month or during times of sharing their faith.
“People always talk about organ donation, but when you make it more personal – my kid is alive because someone donated organs — it really sells it,” Josh said. “It’s easy to talk about it when you have experience with it. We are big proponents of organ donation.” Both he and JJ said the story is also one of faith.
“There were so many God stories along the way,” Josh said. “Just people at the hospital that we ran into who would pray with us – random strangers who brought us gifts, doctors and nurses. The cardiologist prayed over our child before he took him back to surgery.”
JJ said she recommends that people make their wishes to be a donor known to their family long before it is necessary because the moment is traumatic.
“People don’t realize it’s not an easy thing to do as far as the process,” she said. “It adds on time; sometimes lots of time. It is a difficult thing. If your family doesn’t realize that it’s important to you, it’s hard for your family to make that decision. You saying that you want to be an organ donor is amazing.”
Zach is testament to the fact that being a donor can save a life.
Josh said his son is a member of the Wylie drumline, which is ironic considering he has a special heart.
“He has played the drums forever,” Josh said. “And it is kind of funny that the drummer is the heartbeat of the band.”
By Candy Reagan