Half a heart, but all love
By all appearances, Jaxon Johnson is a happy and healthy little boy. And he is one. But he’s had some big issues going on inside his little body the first year and a half of his life.
“He just has some battle scars to prove it,” his father, Justin, said.
Jaxon has been chosen as the spokesperson for this year’s Lakes Area Heart Walk on June 6.
While at their 20-week ultrasound to find out the sex of their baby, Justin and Gena Johnson got some extra news they hadn’t planned on hearing.
Looking back, Gena said she realizes now the doctor took a lot of extra pictures of their son, especially around his heart.
“She came back in and said, ‘there’s something horribly wrong,’” Gena said.
They got a second opinion at the Children’s Hospital in the Twin Cities, where the doctor’s there were less concerned because they had seen cases like Jaxon’s already.
Gena delivered Jaxon at Abbott Northwestern in the Cities. She got to hold her newborn baby for a few seconds before he was whisked off through the tunnel system to Children’s Hospital.
Jaxon was born full term, a healthy 8 pounds. On the inside though, the left side of his heart hadn’t developed. He was born with Hypoplastic Left Heart Syndrome (HLHS).
With this condition, there are two options – heart transplant or the Norwood procedure. Jaxon was a good candidate for the surgeries instead of a transplant.
He had his first surgery at 4 days old to have a shunt put in his heart to help the blood flow throughout his body. The surgery was a success and he was home 13 days later.
His second surgery was at 2 months: Surgeons rerouted the main artery in Jaxon’s neck and connected it to the main ventricle in his heart to increase blood flow to his brain. They also took out the shunt.
But this surgery wasn’t as successful. Jaxon’s oxygen levels kept falling and he “kept crashing,” Justin explained. “He was bluer than blue.”
So within a couple hours of his surgery, the surgeons went in and opened him up again because his left lung had collapsed.
Jaxon continued to struggle with his lung so doctors opened him up once again and put the shunt back in. He was in the hospital for 28 days, which the Johnsons still counted as lucky because of the children they’ve heard that can spend months in the hospital after complications.
Jaxon will have one more surgical procedure before he’s all done, but it won’t be until he’s between 2 and 5 years old. He is almost 20 months old now.
“It all depends on how fast he grows,” Justin said as to when Jaxon’s next and hopefully final surgery will take place.
This last surgery will connect the main artery in the leg to his heart, helping him pump the blood throughout his body.
“They’re rerouting all the plumbing so half the heart does all the work,” Justin said.
Gena said there is no life expectancy data for this heart defect and subsequent surgeries, because the first person to have it is still living and is in his 20s, leading a very healthy life.
Though the doctors have focused on getting Jaxon past this stage in his little life, the Johnsons said they haven’t been told of any limitations Jaxon will have in the future, other than likely being too winded to run a 10k. Which is just fine with them.
Other than that, Jaxon will go on to lead a healthy life.
“He’s our little miracle guy,” Gena said.
They said that when or if they have another child, their mindset going to the 20-week ultrasound will certainly be a bit different than the first time around.
The Johnsons said they are a part of the American Heart Walk in Detroit Lakes (on June 6 at 5 p.m.) because of the good the American Heart Association does for families with heart conditions.
They got involved because of the research the organization funds, and even the hospital rooms filled with equipment that helped keep their baby alive.
“He (Jaxon) probably wouldn’t be here if it weren’t for them,” Gena said.
For more information on Jaxon and the Lakes Area Heart Walk, visit http://heartwalk.kintera.org/faf/home/default.asp?ievent=1032975.
Follow Pippi Mayfield on Twitter at @PippiMayfield.