Baby Sister’s Story

DDC Clinic: A Turning Point for Baby Sister

This story was provided by Baby Sister’s foster mother.

My baby’s story is a little different than most. I’m calling her Baby Sister due to the circumstances. That’s the name her special cousin gave her. Baby Sister was born May 27, 2022 to a young mom. Although the baby’s Apgar scores were normal, she began having issues with feeding and was hospitalized.

She continued to having feeding issues, and a G-tube was placed during one of her hospital stays. After some missed appointments, child protective services was called, and Baby Sister was removed from her mom’s care and placed with a family member. But due to her continued medical needs, it became too much for the family, and Baby Sister was placed in foster care.

This is where the story begins with our foster family. When she came to us, Baby Sister was seven months old, weighed just 10 lbs, was not using her hands, looked very malnourished, and couldn’t roll over. She basically lay on her back when she was awake. Most of that time, she was crying, didn’t want to be held, vomited a lot, and stayed constipated.

We began working with doctors at Duke in North Carolina. We were sent for genetic testing at another hospital where she was found to have GM3 synthase deficiency. The doctor who tested her called me in July 2023 to inform us of the findings and said we should place Baby Sister in palliative care because she wouldn’t have any quality of life being in foster care.

As a foster mom, I wasn’t able to make any decisions for Baby Sister, but I began to research and found Dr. Cruz at DDC Clinic. I went back to our foster care worker and after lots of conversations, I was granted a pass to take her to Dr. Cruz.

We traveled to Ohio where we met Dr. Cruz, Dr. Wang, and nurse Bea Torres-Fults. Our lives were changed forever. They sat down and explained GM3 synthase deficiency to us, and they gave us hope and information so we could plan for a future where we could give Baby Sister a complete life.

Baby Sister has now begun sitting up, eating all her meals by mouth, and currently weighs 22 lbs as of December 2024. She pulled out her G-tube, but we have not had to have it replaced. She’s keeping her weight up.

I’m so grateful for Dr. Cruz and nurse Bea. They’re never too busy for my phone calls and emails. We travel to see them every six months. An appointment that was at first very scary and emotional is now a visit that is exciting as we can share Baby Sister’s progress and connect with other parents.

We’re so very thankful for DDC Clinic.

 

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