Meet Seth – Indiana

“He is amazing and one day he is going to do something amazing,” says Bri, mom and number one fan of Seth.

Diagnosed before birth with Down Syndrome and Duodenal Atresia, a condition where there is a blockage or gap between the duodenum and intestine, at 8 years old, Seth has seen the white walls of the hospital more times than most. However, even after 50+ surgeries, many doctor visits and extended bouts of sickness, he has never lost his soft heart, empathic nature, and according to mom, his ornery ways.

Bri and Kip knew they wanted a family, and while their story may be different than others, it would be God’s plan for them. After adopting their son, Caleb, they spent over a year on the adoption wait list for a special needs child. Not being picked for a child more than once, Bri and Kip were at a point in their lives where they were fully accepting that their path was to be the parents of only one child.

It was around this time they connected with the National Down Syndrome Adoption Network and that is when the rest of their story unfolds. Soon after connecting with NDSA, Bri and Kip received a call that they had two weeks to prepare to be presented to a birth mom, along with five other families. When they arrived, according to Bri, that feeling when you just know when something is right overwhelmed her. Not only did it feel right, but birth mom had also picked out the name Caleb for her unborn child, the name of Seth’s older brother. There was no doubt and when Bri and Kip were picked at exactly the right moment they were meant to be, they had 7 days to prepare for Seth to enter the world!

While they were not allowed in the birth room, Bri and Kip patiently waited in the hospital parking lot for the arrival of their newborn son. Understanding Seth’s diagnosis before this moment and the road ahead, they prepared themselves. When the call finally came, there was no hesitation. At their son’s bedside while he was swollen and hooked up to monitors and tubes, according to Bri, “I can’t even describe seeing him for the first time, it was instant love.”

In the NICU Seth was surrounded by premature or micro babies, which was deceiving, as he was full term and from the outside looked healthy. However, at 2 days old he underwent a 12-hour surgery on his intestines, and while in recovery, it took more time than they had hoped for his digestive tract to “wake up”. “We literally prayed for poop.” Bri chuckled. On day six Seth’s bowels finally started to respond, however he was put on a ventilator after surgery and after taking him off, the horrible noises he would make as he breathed was cause for immediate concern. After examination they discovered that Seth’s airway collapsed, also known as, Tracheobronchomalacia. Back on the vent once again they were preparing Seth for surgery, a risky surgery that they were told only worked 30% of the time. After understanding the next steps, all the family could do was wait, and pray. Seth’s surgery was a 100% success, marking it their doctor’s 1^st successful procedure of this kind ever.

All together Seth spent eight weeks in the NICU, and Bri and her mom spent those same weeks in a hotel waiting for the day they were able to bring him home. Everyday brought a new health challenge and included a blood clot in the liver that miraculously healed itself, but every day, he stayed a fighter.

Once he was finally released, Seth came home to new challenges and according to Bri spent more time in Indianapolis at the hospital than at home. One particular issue haunts Bri to this day. Seth struggled with formula. He consistently projectile vomited, and when there was no apparent reason why, the only solution was to change the formula. That was, until one day out of desperation Bri took Seth to the ER and one amazing ER nurse, who happened to be a special needs mom, sent her to a new doctor, who sent them back to Indianapolis.

Come to find out, Seth’s original surgery closed off the opening of his stomach. After a procedure where they inserted a balloon to expand his stomach, a domino effect occurred, causing pulmonary hypertension and damaged lungs. These issued caused for Seth to suffer from frequent pneumonia that sent him back to the hospital multiple times, which exhausted his body. On one particularly bad occasion Bri was fighting to get him admitted to the ICU and before the hospital agreed, one early morning he coded. Fighting back tears, Bri told me that the doctor said, “hold your baby, it could be the last time.” But the fighter that he is, wouldn’t let that happen, and he responded, was admitted to ICU, was able to rest and heal, and recovered in 24 hours.

While his oxygen levels are never “normal”, Seth and his family do their best to live a “normal” life. Seth attends school is very intelligent and while he is non-verbal, he is fluent in American Sign Language and knows about 100 different signs to communicate. He also has a sneaky side to him, and no baby gate or door can keep him contained when his heart desires. And his heart desires the playground a lot!

Typical kid, with a non-typical story may lead you to believe the hardships have taken a toll, but when I asked Bri if there was a story she’d like to share, it was his big heart and empathic nature she immediately boasted about. Being in a classroom with other special needs children sometimes communication can be difficult, and one day when one of Seth’s classmates was having a hard time, Seth was patient, comforting, and without making a noise or a sign, but communicating with empathy he was able to calm a tense situation resulting in smiles all around. You can hear the pride in Bri’s voice as she told the story, “Watching him is priceless.”

There was a theme throughout my interview with Bri, one that embodied love, support and the desire to give Seth the most normal childhood as possible. And Seth, is happy to participate, especially if it involves BMX racing. With their parents’ support, both Seth and his brother love to race and most weekends they are at the track. Loving it so much that they designed their Labor Day float around BMX, won their kiddie parade contest, and was able to be a part of the big town parade. And even though Seth did take a little break, Bri is happy to report that he is back on the track, and the BMX family is happy to welcome him “out of retirement!”

When I asked Bri about the daily challenges they experience, she indicated that the biggest was the fight for services that her child needs. Fighting insurance, suppliers and sometimes what feels like the world in order to provide her son what he needs to keep him safe and healthy.

And when asked what advise she could give other parents, her number one would be to find your tribe. Surround yourself with like minded and supportive people. She found that with the Down Syndrome Association and now she’s helping younger families navigate the sometime very complicated path of raising a special needs child.

Finding that tribe is exactly how she found A Kid Again. Looking for a group that supported families like hers she came across AKA on Facebook and after reading their mission, she was excited to make contact. Their first family vacation was with AKA to King’s Island, and for the first time her family got to be “just a family, not a special needs family”. The drive didn’t involve hospitals or doctors or appointments or tests, just fun and family. She is hoping to do more in the future and can’t wait to see what adventure they will experience next.

The story of Seth and his family is one of patience, love, and family and if there was one quote Bri would close with, it would be this, “Trust in God’s timing, family, and yourself. Things happen as they should, you just have to believe.”

October 2022