Samuel: Against the Odds
At 20 weeks of pregnancy, Kim and her husband Kory went to their ultrasound appointment filled with excitement. They left with news that no parent would ever want to hear – something was wrong with their unborn son, Samuel. Seriously wrong. He was diagnosed with Heterotaxy Syndrome, an extremely rare congenital birth defect that affects just four babies in a million.
Heterotaxy Syndrome, in simple terms, is when the body’s major organs develop in different locations than they should, resulting in complex anomalies and complications. In Samuel’s case, his heart wasn’t formed properly, leaving him essentially with a two-chambered heart. In addition, the placement of his stomach and intestines put him at serious risk for digestive and bowel complications.
“Less than 25% of kids make it to their first birthday with the type of anomalies he had in conjunction with the Heterotaxy Syndrome,” remembers Kim with tears that still come easily when she talks about that dark time and how they tried to absorb the news. “It was definitely not what we expected.”
Today, however, Samuel is still not what they expected… in a good way! He is four years old and an independent, active little boy. He loves to play outside with his older sister, Lily, and is a great eater who is fond of pickles, olives and especially chips and guacamole. By looking at him, you would never know this little boy has endured three major surgeries as a result of his diagnosis and will likely one day need a heart transplant. The only hint, obvious only to Kim, is that sometimes he pauses between words when he speaks.
“Some people might think he’s trying to think of what to say next, but I know that he’s catching his breath,” said Kim. “The surgeries changed the way his heart flows, and he has a pacemaker now. There were definitely some big anatomical changes to his cardiac output after those surgeries. Both were very long and tough surgeries to endure.”
When babies like Samuel undergo major surgery, particularly around the trunk, they can become hesitant to use that part of the body because it’s painful. Kim knew from her own work, overseeing special needs programs at the YMCA at Pabst Farms in Oconomowoc, how vital early intervention was, so Samuel began physical therapy almost immediately through our birth to three program.
Once a month, physical therapist Lee Wolf came to Samuel’s house for therapy appointments. Kim wanted to be hands-on, so Lee taught Kim the exercises so she could work with Samuel between visits.
“Lee was amazing,” Kim said. “She really helped us throughout the journey and provided emotional support.” That support extended beyond the prescribed therapy to include encouragement that lifted up the whole family. Lee went out of her way to identify outside resources and other support networks for the family that were outside the scope of physical therapy.
Kim explained: “Samuel was a horrible sleeper. When he was baby, we had to wake him up every three hours to feed him, and the waking became a habit. Lee brought us CDs to help him sleep, and she was so caring and nurturing and really listened.”
She also set big goals for Samuel, which included climbing stairs, trunk rotation and overall strength. It became a true family affair.
“She gave me a plan of things to work on for the next month. Even Lily would get involved, and do the therapy right alongside Samuel. It became a fun family thing," Kim said. “Our experience was more than you can imagine. You can get therapy from a lot of different places, but with Lutheran Social Services it was such a well-rounded, caring approach.”