The story of Kristin
Our journey to diagnosis looks different than most, our journey to our boy also looks different. In the fall of 2019, my husband and I, had 3 small children and decided to take steps forward toward becoming foster parents. By springtime of 2020, we were ready to start our foster parenting classes, but the pandemic suspended in person classes. Eventually we ended up in the first zoom foster parenting classes the state of Missouri ever had. We had extra time in our licensing process, so we took the adoptive parent classes as well. Towards the end of our home study our licensing worker asked if we would consider becoming medical foster parents. Despite me telling her we had zero clue about medical children we agreed to adding medical to our license, but we never thought we would get a call for anything beyond giving simple medications!
Cut to October of 2020, on Halloween, we got a call for our first placement, a six-month-old boy was waiting in the hospital for someone to come. The first phone call didn’t provide much information, we knew he was g-tube fed, had delays, and desperately needed a safe home. We told the caseworker we didn’t know anything about tube feeding and she said we would stay over night at the hospital to train on his care. I expected my husband to say no, we already had 3 children under the age of six, this baby needed a lot of complex care, but my husband said yes and so did I.
The following day, we drove two hours to the hospital, so nervous, worrying if we could be who this boy needed. It made no sense, but it was right, a God thing. We had several phone calls with doctors and social workers between our first call and the trip to the hospital we learned the baby had a very long list of complex diagnoses. Entering his hospital room for the first time, laying eyes on him, so small, so frail, so alone was unlike anything I’ve ever experienced. My husband and I just stood there staring at him in silence, after a couple minutes my husband looked at me and said, “he’s with us now”.
We stayed three days and two nights in the hospital before bringing our boy home. During that whirlwind, we learned every aspect of his care, g-tube feeds, oxygen, suctioning, medications, physical therapies and so much more. They told us his genetic diagnosis, KAT6B mutation, no one caring for him knew what it was or what to expect long term. I googled it from the hospital room and read there were less than 100 people diagnosed worldwide. Flooded with instant panic, I stopped googling to focus on learning his day-to-day needs, until we made it home and I could do a deep dive into researching KAT6.
Our baby boy’s name was and still is Sebastian, we call him Bash for short. From the beginning his differences from typically developing babies were apparent, caused both from his genetic differences and the traumatic homelife he had lived in resulting in him coming into foster care. He was limp and stiff all at the same time. He was so underweight, failure to thrive, malnourished, dehydrated and treated for refeeding syndrome. His hair was falling out from lack of nutrition. He didn’t make eye contact; his eyes shook back and forth. He was terrified to be held, had an extreme startle response, and never relaxed in our arms. He vomited frequently. He was in survival mode just trying to recover. We had no idea what his baseline would eventually be. Slowly he began to trust us, we began to find a new normal, chaotic yet balanced routine blending our lives with his constant care and appointments. He gained weight, he began to inch alone in his physical therapy goals. We signed up for every intervention therapy we could find. The early days were so difficult and rewarding. Loving him was easy. Every day as his foster parents, we loved him as our own son, we had no idea how long he would be with us.
As the ups and downs of the foster care system played out simultaneously with the ups and downs of medical parenting, we found the KAT6 Foundation and the Facebook parent communities. We leaned into figuring out all we could to provide our boy every resource he needed. When given the opportunities he needs he happily does the work required, he is so motivated. Having a support system of other parents living this complex medical life has been invaluable. He has never stopped progressing, intensive therapy programs mixed with daily interventions from his First Steps providers has propelled him forward. We have in home nursing, along with supportive extended family and community helping to make our little world go round. He works harder than anyone I have ever known; he is such a positive light.
Being a medical foster parent is an indescribable uphill battle. Just gaining access to his complete medical records took over five months, taking my child to appointments and not knowing simple information such as birth weight or previous surgery dates was so stressful, it shouldn’t have been so hard. We spent a lot of time catching up on appointments he had missed before coming into foster care, his schedule was jam packed every day.
Grieving a diagnosis is something I know parents go through. For me, in the beginning I immediately accepted his list of known diagnoses and only grieved for the situation he had been in leading to him being taken into foster care. As the months and years have passed, he has received additional diagnoses and I have grieved them. I don’t stay down for long, his positive perspective keeps me upbeat, living five minutes at a time is how we do life now. He has a lot of accessories, a list of medical complexities and yet, is my most easy-going child. Everyone who meets him is blessed by his calm presence.
After 505 days in our home, we were able to officially adopt Bash. I was so thrilled at the courthouse when our home nurse took out her tablet and charted, “Patient was adopted today”. We celebrated him with a big party with the family and friends who have supported us on this journey. Our family truly needed him. He has made us better parents, taught our older children a lifetime of compassion and empathy, and given our family the gift of living in the present. Every family should be so blessed to have a child like him.
Kristin Ross O’Brien