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California Family Travels to Good Shepherd Pediatrics for Unique Feeding Therapy Program

August 08, 2017

Heather Green of Mill Valley, California, had a feeling that her newborn daughter Grace was having trouble eating. Grace’s weight was in the 88th percentile at birth, but despite eating constantly, she began to lose weight. Alarmed, Heather took her to three different hospitals in San Francisco, but doctors told her that everything was fine.

“Look at her smile,” they would say.

But when Grace’s weight loss dropped her to the eighth and then the fourth percentile, Heather pushed harder for answers. Grace was eventually diagnosed with a lip and tongue tie, in which a short band of tissue tethers the tongue to the floor of the mouth. The condition can affect how a child eats and speaks and can interfere with breastfeeding.

Grace underwent surgery to repair the condition, and doctors inserted a naso gastric (NG) tube to help her gain weight. Despite these efforts, Grace did not gain the needed weight. Heather says she could tell her daughter wanted to eat, so they tried to remove the tube and feed her by mouth. They also tried to find a speech therapist who could help Grace develop the needed suck and swallow reflexes, but it was not easy to find someone with the necessary experience.

Becoming increasingly concerned with Grace’s inability to gain weight, doctors suggested surgically inserting a gastric (G) tube into her stomach. Knowing the long-term impact a G-tube could have on Grace’s life, Heather and her husband Dan wanted to avoid the procedure and did everything possible to make the naso gastric tube work.

Things finally reached a breaking point when Heather was driving over the Golden Gate Bridge with Grace in the backseat. She heard Grace making a gurgling noise and realized that the feeding tube was coiled and that her daughter was gagging. She stopped the car on the bridge, rushed to help her daughter breathe and knew she had to find a better way.

“I called facilities all over the country that I hoped could help Grace,” she says. “We were met with obstacles everywhere – either wait lists or age requirements or insurance issues – until I called Good Shepherd Pediatrics. I told them Grace needed help now. They understood what we were going through and told me about their inpatient Feeding Program.”

Heather packed their bags, and mother and daughter travelled across the country so Grace could get the help she needed. When they arrived at Good Shepherd Rehabilitation Hospital Inpatient Pediatric Unit, Heather says she was fearful and anxious. Grace initially regressed, but everyone assured her that was normal and the result of being in a new environment. She knew she could not go back to the way things were, so she persevered.

“After a few days, everything started to change and improve,” says Heather. “The doctors and therapists here were very relaxed and confident they could help us through a combination of physical, speech, occupational and recreational therapy. One of the things that sets Good Shepherd apart is that they take a comprehensive approach and treat the whole patient.”

Stefanie Lamanna, MS, CCC-SLP/L, said that Grace had the necessary skills to eat and just needed help to put them all together.

“When Grace first came to Good Shepherd, she was eating purees such as yogurt and avocado at a time when she should have been eating solids,” says Stefanie. “We focused on introducing new textures and showing her how we munch. Because we specialize in feeding disorders, we have the all the tools to help the child and empower her family.”

During the month Grace and her mom spent at Good Shepherd, Grace made enormous progress. The naso gastric tube was permanently removed, she gained weight and was able to eat on her own at the table with her family. It was time for Grace to go home.

Heather says the difference that Good Shepherd made in her daughter’s – and her family’s — life was literally a miracle.