Why I'm No Longer Hiding How Short Bowel Syndrome Affects My Child

November 19 will make nine years I have been in hiding. I hide our whole life. Not because of shame, but because of fear. And I’m exhausted.

That was the day my son, Brady, was born with gastroschisis and a mid-intestinal atresia, which means his intestines were outside of his body. Different parts can be out, but he had all of his bowel out, as well as his stomach. Because of this, he lost 70 percent of his bowel and his ileocecal valve (which is a flap that keeps bacteria from coming back up into the body). He was on TPN for the first six months of his life and didn’t come home until he was 7 months old. Then, he was given a G-tube so he could get nutrients. He had a severe oral aversion; he’s never been bottle-fed.

He eventually learned to eat by mouth, and the G-tube was removed. I noticed quickly he wasn’t growing and gaining weight. It took five years to get a doctor to believe me and give a referral to a specialist. He was then diagnosed with short bowel syndrome, a complex disease that occurs when there is a loss of function of a portion of the small or large intestine. This makes it difficult for him to eat and absorb nutrients. I had no idea it was so serious.

I have a wonderful group I can turn to for help, and I have a couple members I can talk to about what our lives are like.

Other than this group, I hide. And here’s why.

I live in a small town, and when Brady first came home from the hospital I actually got hate mail. There were people telling me I must have done something wrong while I was pregnant and that I should die.

After hiding for so long, that all stopped, and it shifted to, “If that was my child, I would ground him until he ate what I gave him.”

But that’s not how it works.

So I just want to explain to everybody that I didn’t “cause” this, and this is what is really happening when you see my son.

1. He chokes easily if his food enters his mouth the wrong way. When he gags and spits his food in a napkin, he’s not “being a brat,” as I’ve heard you mutter. He’s just trying to get his food down.

2. Yes, he is very tiny for his age, but it isn’t appropriate to tell him that loudly and repeatedly. He knows he is small. He can become hurt over it. It’s called nutritional dwarfism. Try and learn about it. And no, it’s not because he’s a picky eater.

3. After my son shows you his G-tube, the next question is usually, “What’s wrong with him?” And you ask as he’s standing right there. Even though he does have a diagnosis, nothing is “wrong with him.”

4. Then of course comes, “Why don’t you make him eat? Make him sit there until he finishes his plate!” He eats almost a full meal every hour. He is constantly hungry. He feels like he’s starving all the time because his body can’t absorb the nutrients it needs. And then I have to explain to you again that it’s not because he’s a picky eater.

So I want to let all the hate go, and explain to the world that things aren’t always as they seem.

I want people to ask themselves, what would you do if every single bite your child took was a miracle?

Every calorie, every drink of something — it all adds up to a very full day.

However, the joy I get to experience through the whole day is immense. Because every bite, every drink is so special, so miraculous.

Now I want to start sharing my miracle, because it’s time people know what families with short bowel syndrome are really going through.

It’s more than people imagine.