As first-time parents, we were elated to welcome a baby boy into our family on August 6th, 2020. As many new moms do, I had read so many blogs and books about caring for a newborn and what to expect. But nothing prepared my husband and me for learning our son was born with a rare colorectal defect that was discovered when he became ill in the hospital. At 39 hours young, he was transferred to another local hospital with a level III NICU. He had his first surgery and spent six days in the NICU. We learned he would require two additional surgeries during his first year to correct his congenital colorectal defect.
Our son’s second surgery at four months old went without a hiccup and he recovered very well. However, his third and final surgery at seven months old unfortunately was not successful and we discovered just how medically complex our son was. After almost losing him to sepsis, MOD, and compartment syndrome, we desperately needed a colorectal specialist. On April 17th, we were medevacked from Central California to NCH where our son began receiving expert care from one of the world’s leading colorectal surgeons.
For 376 days, we stayed at the Ronald McDonald House, where we didn’t have to worry about housing, meals, and laundry. My husband continued to work remotely in a quiet space knowing he’s minutes away from our son. We met families from across the nation that “got us” because they have similar journeys with their child’s rare colorectal birth defects.
So much has changed since Malakai was discharged from Nationwide Children’s Hospital on April 26, 2022. In the last two years, our family transitioned from the Three Musketeers to a family of five! Malakai has become a big brother to two little sisters, and he enjoys playing and teaching them so many things!
In addition, we’ve learned to care for Malakai’s medical condition at home. We have mostly focused on continuing feeding therapy at home alongside a local occupational therapist. In the past year, Malakai has graduated from physical therapy and is likely to graduate from feeding therapy in the next year. He participated in toddler soccer last fall and recently completed t-ball as well. My husband and I were so amazed seeing him participate in toddler sports because whenever he was medevacked to Nationwide in April of 2021, we didn’t know if he’d ever be able to learn to crawl again or walk, let alone have fun with friends learning how to play soccer and t-ball!
Malakai continues to be seen by his team of medical experts at Nationwide – mostly telemedicine video appointments and one annual visit. His first annual visit was last fall and it was incredible to return to RMH and see our RMH family! Malakai enjoyed staying there for a week and finally had the opportunity to experience some of the cool rooms! We’re so thankful for RMH and everyone there and we look forward to seeing everyone later this fall!
With grateful hearts,
The Kim Family
