Goldenhar's Syndrome

My son was born at 27 weeks and was later diagnosed with a rare genetic disease called Goldenhar's syndrome. I have learned his aversion to eating could be caused by his prematurity, an effect of the Goldenhar's, or a number of other possibilities. He is currently 17 mos. and continues to do anything to get out of eating. His diet consists of strictly Pediasure via a bottle...he will not drink from a cup or eat any solid foods without fighting/gagging/vomiting. His weight gain has been constant, but that's only because he is made to eat, not because he chooses to.

My husband and I have consulted several specialists, resulting in swallow studies, MRIs, endoscopies, etc. with no physical problems found. Our son is seen by an O.T. and a speech pathologist on a regular basis, but after months of therapy, we continue to make very little progress.

We would be very appreciative if you could suggest any other resources, special programs, hospitals, etc. that you have heard of to help kids with this type of problem. Our son is a wonderful, normally developing child who simply seems like he's never going to want to eat.

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Sue Gilbert

Sue Gilbert works as a consulting nutritionist. For many years she worked with Earth's Best Organic Baby Food, integrating nutrition and... Read more

I am not a clinical dietitian, trained in treating such disorders. However, you may find someone who can provide you with the information that you need if you go to http://www.eatright.org. This is the site of the American Dietetic Association. You can click on Find a Dietitian to locate one in your area who may be able to give you the professional advice you need with resources in your geographic location. You may wish to speak with one who is trained in treating eating disorders.

Perhaps the actual approach to feeding/eating may be dealt with in such a way as to help. Often children who miss developmental readiness stages have a more difficult time trying to gain those skills later on. This is true for children who are delayed in the introduction of solid foods and chunky foods that require more chewing ability. If this is the case for your son, you may not be dealing with physical problems so much as you are with psychological ones. You will need to approach the introduction of solids in a way that encourages his acceptance of them.

A trained dietitian should be able to share with you some tactics that may work. Often you will need to start with runny solids, spooning them in in a way that they fall to the back of the throat, essentially requiring he swallow them. As he learns that he can swallow semi-solids, he may gain more confidence, and accept them more willingly, allowing you to gradually increase the consistency of his foods. Because he has never eaten solids before, you will need to help him to gain those skills and confidence necessary to learn to chew and swallow. Your occupational therapist may work well with the dietitian in order to come up with appropriate food selections from both a developmental as well as a nutritional standpoint.

Provide him with role models to encourage his acceptance of solids. When he plays in the company of other children, serve snacks so that he sees others eating. Have him eat all meals with you and your husband.

It may also be that he is gaining a lot of attention by not eating solids. Be sure you approach the whole issue in a very non-emotional way, not making a big fuss over his eating or not-eating solids. When he does start to eat them, offering gentle encouragement, but don't make too big of a deal out of it. Don't ever associate rewards or punishment with eating (or not).

I apologize for not being more specific in my recommendations. However, I think that you should be able to find some help from a local professional dietitian. Good luck and thank you for writing.

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