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This one is about: Feeding and Pierre Robin

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These are the options that I know of for feeding a child with Pierre Robin Sequence -- by the way just to let you know failure to thrive is common in Pierre Robin Sequence; so if this happens to your baby please be aware that this can be a common problem -- fix the problem but don't dwell on the fact that if you were a better mom your child would not have had failure to thrive because a lot of parents have been there.

The major problem is that structurally the baby isn't best equipped for sucking. The cleft in itself causes a lot of problem with suction combined with the placement of the jaw and the downplace tongue makes it extremely hard for the baby to get the nourishment by using conventional bottles.

1. If you already do not have you might try to get a Haberman feeder. This is a bottle/nipple feeding system that was made especially for children with Pierre Robin Sequence. Ask your doctor -- a lot of people have had success with it.  My daughter did not use it so I can't give you much more info on that.

2. The cleft-palate nurser by Mead Johnson also works well for some.

3. Naso-gastric tube: A feeding tube that goes through the nose directly into the stomach. The baby doesn't have to work at all to be fed. It is not surgically evasive but as with anything it has it's pro's and cons. (Again not a Meghann thing except for the first 3 days of her life and she was trying to rip it off her face even then)

4. G-tube: Gastrostomy tube is a surgically placed tube through the abdominal wall directly to the stomach. Works very much like the ng-tube but is surgically evasive but for long term use can perhaps be the best (in my opinion) option. It also eliminates the hard work for the baby and she can concentrate on getting bigger rather than expending what strength and growing abilities on eating.

On the throwing up -- there is a valve at the top of the stomach. That when it works properly keeps the stomach products in the stomach. When it is weak it doesn't do so good of a job. For some children it seems to right itself (Meghann's did) and for other children a fundoplication is indicated. It is a surgical procedure that (in simplest terms) takes the stomach and wraps it around the esophagus to prevent the reflux. I believe there is also medications that can be used too, but I am not familiar with them. Also burping after each ounce or 1/2 ounce can help relieve all the 
air that your niece will swallow if being fed orally.

Suggestions on how to get support:

Check through the hospital and/or pediatrician for support groups that match parents and children with other parents and children with similar issues. Where I live there is a group called Parent Resource Network. If memory serves me all areas of the US must have similar programs put in place. If for some reason they don't know get in touch with your local Health Department.

The Public Health Nurse can also help you with feeding and nutritional problems and can help connect you with proper agencies that will help your nieces family with issues that they are sure to face in the upcoming months and years.

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