Dawson's Story

Q. What condition was your child born with?

Dawson was born with Intestinal Malrotation, it’s a birth defect where your intestines don’t fold into your body correctly, leaving them just floating around instead of secure in one spot. Because of this, Dawson’s intestines would twist and untwist causing projectile vomiting that was misdiagnosed as acid reflux and a milk and soy allergy.

When this birth defect isn’t caught soon enough— it becomes fatal to most.

When Dawson turned 15 months old, I laid him down for a nap and when he woke up, he was inconsolable. I tried absolutely
everything to get him calm before rushing him to the ER. Again, he was misdiagnosed, this time with diabetes. We were rushed to the children’s
hospital where he started crashing and everyone was frantically looking for a reason why. Finally, we got a CT and it showed that his intestines were completely twisted. He went in for emergency surgery and when the surgeon got in there, 90% of his small intestines had already set up gangrene and he was in septic shock. We were told to say goodbye to our boy because he was the sickest baby in the whole hospital, and we only had a 5% at best of him living.

6 days later, he was off life support and recovering with only 10% of his intestines and a new diagnosis of short bowel
syndrome. He is currently TPN dependent through a central line in his chest and is on gtube feeds around the clock. Our hope is that one day, he will be off
TPN (Total Parenteral Nutrition) and back to “normal”!

Q. Can you tell us what the biggest challenges are that come with the diagnosis?

There are so many challenges that come with having a short gut baby who is TPN dependent. 1. No baths, no swimming, no beaches, no water play because of the risk for infection with a central line. 2. No sugary foods like cake, ice cream, and cookies. Sugar causes more diarrhea.

3. No late-night movies or shopping trips because he has to be hooked up to TPN by 7pm. That one isn’t as hard on him as it is on me and my husband. We are busy-bodies and it is hard to have a curfew.

Q. How has this diagnosis impacted you and your child’s day-to-day life?

Lots of PTSD from seeing him so sick, which I think is every medical mama. You never want to see your babies struggling and fighting for their lives. Dawson, however, has no issues with any of it. He is a typical happy toddler boy. You
cannot even tell that he is sick.

Q. What do you want other people would know about your child’s medical condition?

How to look for it. What the signs are for newborn babies and when to start requesting for doctors to rule out Intestinal Malrotation. 

Q. In what ways has your child inspired you or others?
His strong will and determination is something I will never get over. He is my absolute hero. He never gives up and continues to push and push to do more...even at only 22 months old. I’m honestly terrified to raise him because he has been such a miracle.