The Mom Chronicles: VACTERL Syndrome

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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.

Jessica says that the one thing that she wishes she had back then was a referral to a Registered Dietitian (RD). Her growth had failed so badly that now she is on growth hormone to assist catch-up growth. You see, Ronda is now 13 years old and was just referred to an RD by her gastroenterologist who regularly refers patients for nutrition guidance. Now that Ronda is being followed by a pediatric dietitian, she is catching up on growth. And more immediate, Jessica saw an obvious change in Ronda’s energy and stamina followed by strength. Ronda’s lingering health issue is mainly her esophageal atresia, which causes a continual narrowing of the esophagus. She needs to get her esophagus dilated every 4 weeks and as that date gets closer each time, Ronda’s ability to swallow certain food items diminish due to the diameter of the opening. For this reason, she is fed at night with a feeding tube. However, their issue was that they were giving her the maximum that her body could take at night and she was still not gaining weight appropriately. The dietitian helped in switching to a formula more dense in calories to double calories in the time infused and she also coached them on maximizing oral calories with special attention to food textures. The ultimate goal is to maximize catch-up growth, wean Ronda off the tube feedings and get her eating 100% by mouth so she can feel like a normal teenager. They now feel like they’re well on their way to achieving these goals. Their challenges are by no means over, but Ronda and her family is seeing life down the road easier to manage. 

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.

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