Kyson Seth (2015)

Disclaimer: The following was transcribed from the Capper Foundation Archives. The choice of words used at the time this was written may not reflect current Capper Foundation inclusive language and views.

Kyson Seth (2015)

The joy parents feel when they are expecting is indescribable. From the first ultrasound to the day of birth, one thing that every parent hopes for is a healthy baby.

For Jaryl and Stephanie Seth, that changed at their 18-week ultrasound. The proud parents of three healthy boys just learned they would be adding a fourth boy, but that wasn’t the only news they received. They learned that their unborn son, Kyson, had Myelomeningocele Spina Bifida, which is an open lesion on the back that affects the brain and the spine. Kyson’s brain was being pushed to the back of his skull and he had water on the brain. His parents were faced with some difficult decisions. One option they had was a new surgery, in-utero fetal surgery. There was not much information about this new procedure and only four locations in the world were doing it, Children’s’ Mercy Hospital in Philadelphia was one of them.

The risks were so high that Stephanie and Kyson could both lose their lives. Stephanie said, “I really had to think about that. To think about how I was trying to do what was best for Kyson, but I have three other kids. What happens if I die on that table and don’t come home? What are they going to think? Are they going to see it like I was trying to help one of their brothers, or are they going to see it like, why didn’t you choose us?”

Though it wasn’t an easy decision, the Seths decided to try the surgery, with hopes of saving any cognitive development they could. At 24 weeks, a neurosurgeon went into Stephanie’s womb and sewed up the lesion on Kyson’s back. This began to reverse the brain from pushing against his skull. Within two weeks Kyson’s brain had lifted back up, and at 35 weeks, Kyson was born. Jaryl recalls first seeing Kyson. “We hadn’t seen Kyson’s left leg move since right after the in-utero surgery, and suddenly he started to stretch! Both arms moved, his head moved a little, and then both legs moved. I thought “Oh my gosh, he’s got movement! “Which we weren’t expecting in that leg, at that time.”

Kyson began receiving physical therapy services with Kim Coker at Capper Foundation at just a few months old. Kim recalls, “I had never worked with anyone who had the in-utero surgery, so I didn’t really know what to expect from Kyson, but I was really excited to work with him. He keeps making progress and is meeting every challenge he is given.” A main focus for Kyson was to work on strengthening his muscles and to work on balance and flexibility. Jaryl said, “I give a lot of thanks to Capper and to Miss Kim for really helping us continue to push him.” Kyson has reached many milestones while at Capper. Stephanie said, “We went from the days we couldn’t get him to roll over to being able to sit up on his own. That all happened here. He was able to take his first couple of steps here.” Kyson can now walk and, even more recently, he started going up and down stairs. Kyson has begun to catch up with his peers, making significant strides. He has begun to kick a soccer ball, shoot hoops, and climb, like any other 2 year old.

Jaryl, Stephanie, and Kyson’s three brothers continue to push him to his limits, never giving up on him. They incorporate many of the physical therapies they learn at Capper into their daily routine, whether it be going on a family walk, or shooting baskets with his brothers. Kim noted, “ They’re an awesome family to work with. They are open to trying new things with Kyson. I only see him once a week, so a lot of the progress he makes is because of the work they do at home. He loves to play ball like his older brothers and he is motivated by playing ball, which helps with trunk rotation. We can get him to really do anything.”

One thing Stephanie and Jaryl want everyone to know about Capper Foundation is “They’ve given us hope. They’ve basically taken what Kyson already had in himself and projected it to the world. Capper Foundation allows us to take the strengths he already has and use them. To not give up on him and anything we think he may not be able to do; we’ve learned he can do. And to the donors, thank you so much… you are a godsend!”