Support groups prepare new parents for medical challenges

FORT WORTH — A Fort Worth hospital is trying a new strategy to save the lives of a unique group of babies.
The infants’ challenges can break a parent, requiring care so detailed and constant that mistakes (or exhaustion) can lead to the baby going back to the hospital again and again — or never going home.
So doctors at Cook Children’s Medical Center are looking for answers outside the walls of the hospital.
A few months after Courtney Watkins told Trevor Baisden he would be the father of their child, doctors showed the couple a sonogram. Their unborn daughter had a birth defect: gastroschisis. Her intestines were spilling outside of her body.
«The first meeting was just like ooh, wow… this is overwhelming,» Baisden said.
In March, doctors at Cook Children’s Medical Center delivered Lyla two months early. They removed part of her intestines and reinserted what remained.
Later, her intestine was connected to a bag to collect her waste. Nutrition comes from two tubes.
«I come up here every day,» Watkins said. «I just can’t wait to see her; she’s my little miracle.»
«You would be amazed,» said Dr. Erin Hamilton Spence, a neonatal physician at Cook Children’s. «There are some people… they don’t have the coping skills to be here, and to watch this happen to their babies, and so they detach.»
With different parents, a baby like Lyla might never see her homecoming.
«She’d be here for six months, nine months, a year… at least,» Dr. Hamilton Spence said.
Lyla, however, was released from the hospital on Tuesday.
Watkins and Baisden credits an online gastroschisis support group that Courtney sought out while she was still pregnant — Avery’s Angels.
«The mom that started it lost her baby when he was three months old,» Watkins said. She was assigned a veteran mom to teach her what to expect, so by the time Lyla was born, she felt ready.
«I knew all the tubes and everything she was going to have,» Watkins said.
«I think it can make a big difference,» Dr. Hamilton Spence said.
After hearing about stories like Watkins’, Cook Children’s Medical Center decided to start its own gastrointestinal support group modeled after Avery’s Angels, known as GUTS — Guidance, Understanding, Teaching, Support.
«The story remains to be told about whether this keeps people from going back into the hospital,» Dr. Hamilton Spence said.
Courtney Watkins, however, doesn’t need a study to know that encouragement from someone who’s already traveled the road ahead is sometimes all a family needs to believe in a brighter future.

Share