Cleft teams in Providence and Boston

Children and adults with cleft lip and/or palate issues

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Cleft teams in Providence and Boston

Postby samsmom » Mon Sep 10, 2007 2:50 pm

Hello everyone,

Thanks to those who responded to my earlier post, we are awaiting the arrival of our little girl on October 15th and know she will have a bilateral cleft lip and palate involvement. I really appreciate the tips so far on feeding!

Does anyone have experience with either the cleft palate team at Hasbro Childrens hospital in Providence or the one at Boston Childrens Hospital? We are evaluating both and would appreciate any feedback from those who have used either. Thank you!

Trish
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Boston & Providence

Postby Linda S S » Mon Sep 10, 2007 6:20 pm

Hi Trish,
Welcome to the list! I live near Cambridge and we take the train to Providence once in a while but I have no experience with either of the teams. My niece who was born with UCL lives in WI and will have her surgery at Shriners in Chicago, probably in Oct. They go for the assessment this Thursday. My sister and brother-in-law found out about her cleft lip when she was born as they had not had any ultrasounds done. I put together a half page information sheet about CLP for them to share with friends and family. This included it with the birth announcement.
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Postby jacksmom » Wed Sep 12, 2007 9:27 am

Trish, Hi and welcome! I have a friend who travels all the way from Alabama to Boston for her daughters surgeries. She raves about Dr. Mulliken and what a wonderful surgeon he is. My son had just a mild cleft palate, so we stuck with the doctor here in town. He did a wonderful job, but if Jackson had had his lip involved, we probably would have explored more options as well. I can get you in touch with her, if you would like to private message me your email. I'm sure she would be more than happy to talk with you. It may take her a little while, she is in Boston this week for her daughters gumline closure and nose touch up. Good luck! Be sure and keep us posted!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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cleft teams in Boston

Postby Julie Lauzon » Wed Sep 12, 2007 5:02 pm

Hi Trish. Congrats on your pending birth. I live in Auburn, MA. My son Nicholas was born on Sept 6, 2003, he just turned 4. He was born with a unilateral cleft lip and palate. He had his surgeries at U-Mass
in Worcester.

However i have met a few people along the way that have had their childrens cleft repaired at Boston. The only reason we didn't go ther was because they do the surgey in stages and U-mass di his lip nose and gum repair all in one surgery at 3 months pld and repaired his palate at 9 months.

Everyone who went to Boston was very happy however. Dr. Mullikens is one of the best as well as my sons surgeon Dr. Lalikos. If you want to e-mail me personally i can give you more details. I would like to help any way i can

smiley52270@netscape.com
smiley52270@yahoo.com or jlauzon@travelers.com

you can e-mail at any one. I will be more than happy to share some pictures too

Hope to hear from you

Take Care
Julie Lauzon
mom to Nicholas ucl&p 4yrs old
Auburn, Massachusetts
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