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Specialized Care for a Special Baby

July 29, 2017 | VNA Staff | Story

Baby R was born into this world with two loving parents. Two loving parents that were worried about her fussiness.

She was initially diagnosed with colic and reflux. Then, she was hospitalized twice in her first few months of life, first for weight loss and second for seizures.

Baby R’s Family Support Worker (FSW) in the Healthy Families America program was able to support Baby R’s mom and dad throughout, aiding in translation with medical workers (the family is from Guatemala), seeking special care from VNA’s Acute Maternal-Child team, and helping them nurture the parent-child relationship. The FSW also identified barriers to care, including transportation issues, lack of information regarding resources and limited finances.

At one point, Baby R’s mom said, “I love when you visit, I always learn something new.”

A More Serious Diagnosis

During a screening when Baby R was 8 months old, she scored low on several levels. After a discussion with their pediatrician, the family decided to take a wait and see approach. The FSW provided the family with activities they could do to improve Baby R’s gross motor skills, along with parenting techniques.

“I provided them with information on parents being teachers first, and I empowered them to be their own best advocate. We also did multiple activities that brought joy to their interactions,” the FSW said.

The FSW continued to follow up with the family about Baby R’s motor skills. After one home visit, Baby R’s mom expressed frustration that she wasn’t seeing any improvement. The FSW then helped the family contact the Early Development Network (EDN) and also accompanied the family on their first visit.

Baby R ended up going through genetic testing, and was found to have a genetic condition. Because the HFA program is staffed with nurses, the FSW was able to provide the family with a more comprehensive explanation of the condition.

“I am so grateful for my support worker and the nurse for supporting me and giving me pamphlets and information when I did not know where to look,” Baby R’s mom said.

Community Support

The FSW also provided referrals to the Munroe-Meyer Institute for additional physical therapy, occupational therapy, speech therapy, and feeding therapy. Baby R was also provided with a special walker that gives her the support and stability she needs.

Baby R is now a toddler, and is graduating from the HFA program soon. The family has been supported through another pregnancy, and in establishing a budget, finding new housing, and in applying for Social Security benefits. Above all this, the family has learned how to navigate through a special needs diagnosis and how to empower themselves to advocate for their child.


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