The word surgery is the type of word that can instill fear in any parent. It’s a small, seven-letter word that is life changing for some parents and children. Having a child with special needs is a learning process; you try to learn what is best for your child and how you can help in any way by giving them the best care. Sometimes, there is a point where you have to put your faith in a surgeon’s hands to save your child’s life. Many children with special needs require surgery to keep them healthy and in some cases, keep them alive. This exact question leads some parents to ask, When is enough? and When is surgery no longer an option for their child?
Andrea Welch and Mary Toteve have faced many surgeries with their children. Welch, mother to Grady, was really unaware anything was wrong. “He had fevers that different doctors could not explain. Six months later, he was air lifted and needed surgery within a few days,” Welch says. Grady was diagnosed with lissencephaly, a rare brain formation disorder, which Welch was unaware of until his first seizure, at age 2.
Toteve had a similar experience. “I’d taken him [Jordan] to the regular pediatrician, and she said it was probably the flu. So I got a second opinion, and they called his pediatrician to report signs of hydrocephalus,” Toteve explains. Like Welch, it was a quick turnabout after finding a diagnosis to the operating room.
“We had to get over to the hospital immediately where we did x-rays that confirmed there was water pressure building up around his brain and it needed to be drained immediately,” Toteve said. Her son Jordan, was been diagnosed with Spastic Quadriplegic Cerebral Palsy and had his first surgery at six and a half months old.
Both Grady, 5, and Jordan,12, have each had five surgeries and Welch and Toteve are asking, is enough, enough?
“At first, I didn’t think there was any other options. Then we met a specialist, and she explained other options such as Botox in his muscles,” Toteve said.
Both mothers agree that their first option is to try another alternative option instead of surgery.
“If we can change medications and eliminate surgery, I would rather do that so my child doesn’t have to go through more than needed,” Welch explains.
Both moms are currently discontinuing surgery unless necessary. They are looking for alternative routes to take and eliminate unnecessary surgery and everything it entails.
“If it’s a life or death situation, he will have surgery. If it’s not necessary, but will improve him in someway, I leave it up to him to make the decision. If it’s not necessary, why do it?” Toteve points out.
Welch says, “I always look for other options and do my own research. I want to make sure what he is getting is beneficial and isn’t just prolonging something.”
Toteve and Welch strongly encourage researching before sending your child into the operating room.
“Look at all of the options to see what’s best for your child, and don’t let your own feelings get in the way. The biggest thing is you really have to advocate for your child everyday because children can’t do it for themselves,” Welch says.
As surgery always has possible risks, Toteve says, “ Make sure you let them know how much you love them and appreciate them being in your life.”
The word surgery is a scary word, but sometimes a little research can help find alternative routes to provide care. As parents, doing what is best for your child is always the first choice, and sometimes you may be able to find that best choice may not be surgery.