Berkeley Parents Network: Cleft Palate

Berkeley Parents Network

Cleft Palate

Berkeley Parents Network > Advice > Advice about Health > Cleft Palate

July 2003

Hi, My brother's wife just gave birth to a baby boy with a severe cleft palate and cleft lip. As far as we can tell, there have been no incidents on either side of the families, but doctors are telling them that this is a genetic defect. Not knowing anyone with a child with this defect, we aren't sure what to expect, but have been told that although multiple surgeries are necessary, the results can be great. Anyone with experience with this? Are there support groups too? I'm expecting my first in a few months, and I have to admit, am a bit worried about the possibilities if it's truly genetic. Any advice would be much appreciated. Jennifer

If your brother lives in the area, tell him to ask his pediatrician to refer him to the Craniofacial Clinic at Children's Hospital Oakland. They are the greatest group of Doctors and other specialists you could ever imagine. They follow cleft kids and many more involved cases. Once you are apart of the group, you will get service/appointments that are not possible for most people. I work with these children, and yes they generally require a couple of surgeries, but the technology/surgical technique is fantastic now.

P.S. the chances of you having a child with cleft lip or palate is quite small.

Congratulations on your upcoming birth Sarah

Part of your concern about the implications of your nephew's cleft palate being ''genetic'' may be unfounded it's easy to forget, but ''genetic'' and ''inherited'' are not synonymous. Genetic disorders may be sporadic -- arising in the individual during development, or from genetic errors in the specific egg or sperm from which that fetus came, instead of from inherited errors present in the parent's genome (and hence potentially in relatives' genomes). There are both environmental factors and random errors which can interfere with the structure or expression of a gene, resulting in a genetic, but not inherited, defect. If there are no other occurrences of cleft lip or palate in either parent's families, a sporadic defect may be most likely.

I did a quick web search and found some nice resources for cleft lip and palate; here's one that looked very promising http//www.widesmiles.org/

A great resource for you and for your brother and sister-in-law is a genetic counselor. Hopefully, they will meet with one soon as part of the diagnosis and planning process. If not, there should be counselors who see private patients. I would expect that your brother will be referred to a specialty craniofacial clinic, which will have both highly knowledgeable physicians as well as genetic counselors, and which would connect them with support groups etc. If not, please be aware that these clinics are available, and you may have to be proactive to get to them.

I have a friend whose son was born 20 years ago with a cleft lip and palate. Surgeries corrected this quite well, and I'm sure surgical techniques are even better now. They also told her she wouldn't be able to breast feed; she said, ''Oh yes I will,'' and indeed, after pumping for the first couple of months, after some early surgery they did settle into successful breast feeding!

I too am the parent of a child with a sporadic genetic defect. One last issue which you might want to consider, to help support your brother and sister-in-law, is that we parents often get caught up in trying to figure out how this happened, and blaming ourselves. The scientist in me can muse on this productively and without much sense of self-blame; but the mother in me has sometimes sunk to the depths of ''if only'' I'd somehow avoided whatever caused it. But other than gross negligence (taking teratogenic drugs, for instance), for most of us, the causes of these defects are still completely unknown, and therefore were unavoidable. By the way, my child had a life-threatening defect, completely corrected by surgery; he is now a smart and healthy five-year-old, with no apparent residual effects (except a scar, which he finds mildly interesting).

Kate

Depending upon whether your family member lives near San Francisco, the person I would recommend for cleft/palate repair/surgery is Bryant Toth, MD. at UCSF. In addition to being a leading surgeon, he also goes abroad to other countries and and donates his time doing surgeries there, so his heart is in the right place too.
Tim in Berkeley

Based on your description of a lack of cleft lip history on either side of your sister in law's family, your child is probably not at risk for cleft lip or palate. Cleft lip and palate does run in families, but it can also occur spontaneously without a previous family history. When it occurs spontaneously, the affected child has a risk of passing the defect on to his or her children, but other relatives are not at risk.

Sometimes cleft palate and lip may be associated with other hereditary syndromes with other anomalies such as heart defects, hand defects and other problems with the skull bones, but this also does not appear to be the case in your situation from your description.

As far as your nephew is concerned, he absolutely can be treated, and you are correct, multiple surgeries will be necessary, but results can be excellent. If your sister in law has more children, prenatal sonograms can detect the cleft lip deformity usually by the second trimester.

If you are really concerned about the possiblity of cleft lip in your unborn child, you also could evaluate the baby's face with sonogram prenatally, which might make you feel better.

Elizabeth Lee, MD, Plastic Surgery

this page was last updated: Aug 13, 2003

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