Living With Gastroschisis: One Toddler’s Story

At 26 weeks of her pregnancy, this mom knew her baby had serious health concerns. Baby Mayana’s ultrasound was showing her intestines were not inside her little body. They were maturing outside her body cavity. The doctors advised the family of the treatments Mayana may be facing if the condition did not remedy itself—including removing sections of her intestines.

With that option, Mayana would have symptoms from gastroschisis (short gut syndrome and short bowel syndrome or SBS). Everyone prayed for a different outcome.

After being carried to full term, Mayana was sent immediately into surgery where physicians removed nearly her entire intestinal tract. When the operation was complete, Mayana had 11 inches of the intestine where she should have had more than eight feet.

The newborn’s family started researching the care and conditions of SBS.
When the family met the tiny girl, grandma, Ms. Didman, was so deeply moved by her desire to help that she was determined to become Mayana’s full-time caregiver.

With no previous medical training, Grandma jumped right in. As Mayana had a lengthy stay in the hospital, Ms. Didman absorbed all she could about helping the new addition to her family.

Right from the start, Ms. Didman made certain her granddaughter spent every day like most kids—except for her dietary needs and her need to stay dry. As Mayana had both a central line and a colostomy bag, she had to be kept dry to avoid infections. Baths are given as sponge baths, and a dry suit had been ordered so Mayana can go swimming and splash in puddles.

Taking care of lines and bags was new for this grandma and she admits she was initially nervous, but everything soon became routine. Instead of changing dirty diapers, she was changing dirty bags.

When it comes to eating, Mayana’s shortened digestive system processes everything so quickly there’s no time for her body to absorb it. It literally passes right through her. For that reason, food is only about taste for Mayana. She is especially partial to chicken nuggets and strawberries!

As Mayana’s body doesn’t utilize the nutrients from food, she needs to get nutrients from other sources. To help satisfy that need, Grandma connects a bag near a vein in Mayana’s heart when she goes to bed. The process can take 10-12 hours or longer. As dehydration and malnutrition can be concerning for those with SBS, the mixture usually contains protein, fats, sugars and other essential nutrients typically received through solid foods.

There’s a hope that as Mayana grows, her intestines will grow with her allowing her to have a regular diet of everything she likes beyond chicken nuggets. As for Ms. Didman, she hopes to take teaching courses to help her young charge when she enters school.

In the meantime, Grandma works hard to keep up with her very busy granddaughter who loves strawberries and very soon, splashing in puddles. Read more about their journey here.

To learn more about gastroschisis, check out our partner Avery’s Angels.

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