By Kyle Barnett August 15 at 9:49 am
At this time last year, toddler Noah Townsend was near death.
The 3-year-old son of Luling native Casey Townsend and her husband Brad was suffering from a rare heart condition called cardiomyopathy. The disease causes the deterioration of the heart muscle and eventually leads to heart failure.
Within the space of a few weeks, Noah went from experiencing heart problems to being diagnosed with cardiomyopathy and shipped off, along with his parents, to Children’s Hospital in Texas to await a heart transplant.
While Noah was waiting for a new heart, his conditioned worsened.
“He went into cardiac arrest and had four open-heart surgeries in two weeks. He was very unstable when we were there,” Casey Townsend said.
In fact, Noah was in such bad shape when doctors implanted a temporary pump into his heart to keep him alive that they worried about his survival.
“He went septic and got an infection that threw his right heart into failure,” Townsend said. “We were told he was not going to make it several times. The last surgery we went through the surgeon didn’t even know if Noah was going to make it through the procedure.”
Townsend said it was just happenstance that the pediatric surgeon happened to be available for emergency surgery when Noah experienced heart failure.
“Thank God he was finished with the OR and ready to do the surgery right then and there. Just the way things worked out, somebody, or a few people, were looking over him,” she said.
After spending six months in the hospital recovering from heart failure, Noah was finally ready for a new heart.
The implantation surgery took 16 hours during which time Noah’s cardiac function was put on an artificial bypass system.
Noah came out of the surgery last September. Although his family was optimistic, they knew their path would not be easy. They saw this firsthand when a girl who had been hospitalized at the same time as Noah received a heart transplant and her body rejected it.
“She didn’t even make it a year. She was two rooms down from Noah,” Townsend said.
In contrast, she said Noah has not looked back since receiving his new heart. At this year’s Fishing for Frankie tournament, Noah was out in the crowd, playing like a child who had never gone through such a terrible ordeal.
“He bounced back from everything. He is a very tough kid. A lot of people tell us they can’t wait to see what he has in store,” Townsend said.
However, the family has to be careful. Noah is on immunosuppressant drugs to keep his body from rejecting the implanted heart, which in turn makes him vulnerable to other diseases.
“We are big germaphobes now. We wipe everything down and if he goes to the doctor he wears a mask,” Townsend said. “We can fight it, we stay on top of it and stay in charge and go to the doctors.”
In only a few weeks Noah will undergo a biopsy to ensure his heart is not being rejected, something he will have to continue to do as he gets older. Eventually Noah will need a new heart, something his family is hoping does not happen for 20 years.
“We are hoping for 20 plus, but that is the other tormenting thing…we never know. We could go to the doctor and they could say he has coronary artery disease,” Townsend said.
In the meantime, the family is trying to get back to some semblance of normalcy.
After a few months away, Brad was able to return to his same job. Townsend has also been thinking about returning to her part-time job as well.
After such a struggle, the Townsends admit getting back to a regular life is undeniably difficult.
“Slowly but surely we have allowed ourselves to settle back into some sort of normal, but to be honest it is a struggle,” Casey said. “The last year we have been all the way at the bottom and we are slowly climbing our way up the ladder.
“We are in a much better position than we were a year ago.”