In June 2013, doctors told Katie, pregnant with twins, and her husband that one of babies would be born with medical problems.
Katie, who also had a toddler at home, was admitted to the hospital and doctors began fetal monitoring on both babies for the rest of her pregnancy until the twins were born.
Jaxon and his twin brother were born on August 9, 2013.
Jaxon Buchholz was born with a rare condition known as (omphalocele-exstrophy-imperforate anus-spinal defects) or OEIS complex - a type of abdominal wall defect in which the intestines, liver and sometimes other organs remain outside of the abdomen in a sac.
Several of Jaxon’s organs were severely impaired. He couldn’t digest food, some of his internal organs, including his bladder, were outside of his body and he had some spinal defects.
The third day after he was born, Jaxon underwent a complex operation which was the first stage of reconstructive surgery. This was followed by
a long hospital stay which included two additional surgeries, countless medical ups and downs, various obstacles, some baby milestones, many good days and too many not so good days. Jaxon finally went home right before Thanksgiving for the very first time – 468 days after he was born.
Between Thanksgiving 2014 and September 2015, while Jaxon continued to grow and flourish at home, his team of caregivers at Yale New Haven Hospital, led by Doruk Ozgediz, MD, pediatric surgeon, planned for his return in what would be Jaxon’s most complex procedure to date. A team of 15 pediatric surgical specialists took nearly 26 hours to perform 12 intricate procedures to internalize Jaxon’s organs.
“The entire team stayed the whole time, even though they were offered the chance to go home and have team members relieve them,” Katie explained. “Everyone stayed – that’s the kind of people who work here.”
Thankfully, Jaxon’s surgery was a success. Jaxon was discharged just six weeks after the surgery.
“I have never experienced the level of care and compassion that we received here,” continued Katie.
Throughout his stay, they did everything in their power to do the right thing for Jaxon and give him the best chance at a normal life. The people here love what they do and it’s contagious,” said Katie.
Dr. Ozgediz, who coordinated the teams that performed Jaxon’s day-long surgery added, “Caring for Jaxon as a team, particularly with his very complex surgeries, illustrates all of the things that a children’s hospital should do.”
“This procedure was the ultimate team sport. We had pediatric surgeons, ENTs, orthopedists, urologists, a plastic surgeon, an anesthesiologist and an operating room nurse who just would not quit,” commented Michael Caty, MD, YNHH chief of pediatric surgery.
“We are so excited to have Jaxon back at home with us,” said Katie. “He has a Superman room at home, yellow and blue, with a Superman mural and decals on the walls. Jaxon is our Superman – he’s SuperJax!”