Here we are with our second installment of The Mom Chronicles. The format going forward will be a bit different with it being told as a story after interviewing the family versus question and answer format in the first post. The next couple stories are a powerful account of how the dietetic profession can have such a positive impact on health and it makes me proud of what we do. Some people think of dietitians as weight management experts, but clinical nutrition is an area that directly shows the influence of food therapy on the body's growth as well as its recovery and management of disease. Even though the Mommy Dietitian Blog primarily discusses wellness, it happens to be my favorite line of work.
Meet the Duncan family – Jessica, Bill and daughter Ronda.
Jessica and Bill were a newly married couple that had children in their future. As life would have it like many other couples, they unexpectedly got pregnant anyway despite being on birth control. Throughout her 9 months of pregnancy, the couple was told that they were having a healthy baby. But at delivery, they discovered that their precious baby had a rare disorder called VACTERL Syndrome or VACTERL Association. “VACTERL” is an acronym that lists the congenital anomalies that these children can have – most children born with this syndrome have three or more. In their baby, Ronda’s case, that was the case. She had congenital heart defects, her esophagus was unattached to her stomach and she had limb and shoulder disfiguration. Ronda went through dozens of surgeries and was not even fed by mouth until she was 5 months of age. Jessica was extremely thankful that when she was fed, she took the bottle very easily instead of having trouble accepting something in her mouth (which is often the case in late oral feeding). Ronda had clinical failure to thrive from the beginning and it was a constant struggle to keep weight on her.
What resources would you recommend for any family that has a child with similar issues?
The Vater Connection: a community forum of families that have children born with VACTERL Syndrome. (previously named VATER Syndrome, but later congenital anomalies added to lengthen the acronym)
EA/TEF Child & Family Support Connection: was formed by and for families of children born with (Esophageal Atresia and Tracheoesophageal Fistula) EA/TEF and the medical professionals who treat them dedicated in providing educational resources as well as emotional and practical support to aid in the daily care of our medically fragile children.
To find a Registered Dietitian in your area that specializes in your or your family’s nutrition needs, go to the American Dietetic Association’s Find a Registered Dietitian link on the top right of the main page.
Family names were altered for privacy.