It’s a Saturday here at the Ronald McDonald House and I stepped away from my baby’s hospital bedside to do a quick load of laundry and the RMH team just announced over the intercom that lunch was ready for families in the kitchen. An immediate smile popped up on my face and my heart filled with gratitude knowing my husband and I have a “home away from home” when we are more than 2,400 miles away. Enjoying a home cooked meal is just one of the comforts of home we are thankful to enjoy during our stay.
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 had learned knowledge on what to expect and because of the pandemic, we took an online birthing class. But nothing prepared my husband and me for learning our son was born with a rare colorectal defect that was discovered when he was 36 hours young after 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. We didn’t learn until Malakai was six months old that he is classified with VACTERL association, having three of the seven birth defects listed.
After months of prayer and my time to return to work approaching, my husband and I made the decision to remain home for the last two surgeries. 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 along with the children’s hospital back home discovered just how medically complex our son was. After almost losing him to sepsis, MOD, and compartment syndrome, we desperately needed a colorectal specialist. After a miraculous connection, we received a call from a dear mama who referred us to her youngest son’s doctor who leads the colorectal center at Nationwide Children’s Hospital. Within 48 hours, our son was accepted as a patient. On April 17th, we were medevacked from Central California to NCH.
Our son is now receiving expert care from one of the world’s leading colorectal surgeons and we continue to learn about his rare condition from the entire medical team. Every single day, Malakai is getting stronger and improving. He has three procedures weekly to gradually restore his health. We are literally weeks away from being able to bring our baby boy “home” to the RMH to continue his recovery so we can learn how to care for him medically with experts across the street before he is finally discharged — all in preparation to train us as parents to care for his new medical needs at home. We will recover for 4-6 months back home and will return for round two of reconstructive surgeries. Malakai’s plan of reconstruction will possibly go into his 2nd and 3rd birthdays.
At the Ronald McDonald House, we don’t have to worry about housing, meals, and laundry. My husband can continue to work remotely in a quiet space knowing he’s minutes away from our son. RMH really has become our home away from home. We’ve met families from all across the nation. We’ve shed tears here with other mamas and prayed for each other’s children. We’ve met families that “get us” because they have similar journeys with their child’s rare colorectal birth defects. We’ve sat with Ms. Fran as she helped us make an adorable banner to hang on our baby’s hospital door and she kindly volunteered to help us make birthday decorations to celebrate his upcoming first birthday. We’ve cheered on the children who learned how to cook delicious meals for us during their RMH Summer Culinary Camp. And we’ve walked the gardens and play area just to escape the hospital room to capture a few breaths of fresh air.
All of these experiences bring a huge smile to my face! My heart is filled with joy knowing that our son, Malakai, will be able to experience RMH for years to come when we travel across the country for his future reconstructive surgeries and follow up care. We look forward to future stays and seeing familiar faces when we return. We’re excited to see the continued growth and impact RMH makes on families near and far.
The impact and services the Ronald McDonald House is able to provide are made possible by generous contributors like you. It is your support that allows my family and families like mine, to have a “home away from home.” We are truly grateful for everything the Ronald McDonald House has done to support us on our journey and we will forever be grateful for the opportunity to return “home” for our future hospital stays with our son. Thank you for your support to help families like ours.
With grateful hearts,
Valerie, Patrick & Malakai Kim