Becoming an Advocate for My Son

Written by Colton’s mom, Heather

My son, Colton, was born at 30 weeks via c-section at our local hospital. The pregnancy was going well until 29 weeks, when he was diagnosed by ultrasound with a mid-gut volvulus. The volvulus is an intestinal malrotation of the gut as it is forming. When he was born he was rushed into surgery to remove the malrotated intestine that had become necrotic. A total of 2/3 of his small bowel was removed. He would remain in the Neonatal Intensive Care Unit to recover and grow.

During his stay in the hospital, unbeknownst to us, Colton also had 2 untreated bouts of pneumatosis, which means gas within the wall of the bowel. It is also part of the criteria for necrotizing enterocolitis (NEC). NEC was a term we had never heard of before in the NICU. We had no idea it could be life-threatening.

After 10 weeks in the NICU, Colton was discharged home. I was told he required no further treatment or intervention. I was a first time mother so I listened, but I couldn’t shake the feeling that something wasn’t right. I persisted and kept taking him into the pediatrician and the general surgeon who did his volvulus surgery. They assured me he was fine, just colicky. I was overreacting. I couldn’t ignore this horrible feeling…at 6.5 months all he did was cry, he didn’t sleep, and he stopped eating. I took him into the local ER and he was admitted to the pediatrics floor but was just observed and no action was taken.  At that point I had had enough and needed answers!

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Colton receiving treatment

While Colton was in the NICU, we made friends with the family across the hall from us. The mother, also named Heather, told me that her son, Reid, had short gut syndrome as a result of NEC. She mentioned that I could ask for a medical necessity transfer to a children’s specialty hospital. So I did. I asked everyone who came in the room. I was desperate. No one was listening to me. Something was very wrong and I felt like we were losing him. We couldn’t wait and watch him die. I called the chief nursing officer and the chief operating officer and begged them for a transfer. At 9 pm, after 16 hours of tirelessly advocating for him, we got the best news I had ever heard: we were scheduled to transfer to Cincinnati Children’s Hospital. I knew if we could make it through the night we would get him the help he needed. I held him in my arms all night and prayed. Morning came and so did our Mobile Intensive Care Unit (MICU) transport team. I left that day with him and we didn’t return home again for 5 weeks.

It was at Cincinnati’s Children’s that we finally had access to an Intestinal Rehabilitation (IR) team and realized the extent of his current condition. After many tests, a treatment plan was developed for his “chronic condition.” I said, “What chronic condition?” They responded that Colton had short bowel syndrome because he had 2/3 of his small bowel removed. I never knew…they never told us. I was crushed. This was the lowest and darkest point of my life.

After further testing, Cincinnati diagnosed him with failure to thrive, malnutrition, intestinal failure, dehydration, anemia, FPIES (colitis of his entire colon), short bowel syndrome, along with pneumatosis. After finally receiving medically appropriate treatment, he was a different baby. It was incredible to see his transformation. I became educated in short bowel syndrome and how to do his central line care. He began to thrive. He learned to sit up for the first time. He tried some solid food, received physical and occupational therapy, and we both learned how to live with lines.

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Advocate moms Heather and Heather, with their sons

Without the recommendation from Heather, my son wouldn’t have had the opportunity to receive the life-saving treatment he needed. She and I have forged a relationship rooted in our shared experiences and we support and encourage each other through the tough times. Now, we share our hope and experience with others through Sister Friend Up, our Facebook blog. It is an online community that focuses on the NICU and parent advocacy, preemie parenting education, mental health and wellness, and family topics.

My son is now five years old. While he has a life-long, chronic condition that requires specialty care, Colton doesn’t let it stop him from reaching for his goals and being an overall happy kind of kid. My experience has taught me to be an advocate for my son, and I hope to encourage other parents to do the same.

 

 

Note from the NEC Society: You can help babies like Colton by joining us here.

You can read more stories of babies and families impacted by NEC on our NEC Stories page.

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