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Forum
-> Children's Health
peppers
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 Tue, Nov 13 2012, 9:54 pm
My son was born with a cleft lip (not palate). Anyone dealt with this that could give me some info?
Thanks so much!
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Rubber Ducky
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Tue, Nov 13 2012, 10:27 pm
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Just posting to wish you well. I was born with a cleft lip and palate, but as that was over 5 decades ago, I don't have recent experience with treatment options -- and in any event, I was kinda young to have an opinion, it was my parents who made the decisions.
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amother
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Wed, Nov 14 2012, 9:04 am
My sister's son was born with one, and she went to Boston to have surgery done to repair it. I know that when she was researching it, most people sent her that way.
Hatzlocha!
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peppers
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Wed, Nov 14 2012, 7:10 pm
Thank you for your responses so far. We are working on getting an appointment in Boston. Any idea how long the procedure took or how long they had to stay?
Any other information is welcome and appreciated!!
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amother
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Wed, Nov 14 2012, 8:16 pm
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Boston amother here. They slept in Boston for 2 nights, the night before since they had to check into the hospital early in the morning, and then he had to stay overnight. I'm not sure exactly how long the procedure took, about a couple of hours.
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amother
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Wed, Nov 14 2012, 8:46 pm
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My dc had a different birth defect on the lip necessitating multiple reconstructive surgeries. How old is your baby? We had a room at Ronald Mc Donald house. We didn't sleep there. We stayed in db's room. It was great to have a place to shower and refresh.
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peppers
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Wed, Nov 14 2012, 10:02 pm
Thanks Boston amother.
Other amother, my son is 3 weeks old. I heard about an organization called Rofeh that provides accommodations and such for people coming to Boston for procedures.
How much space was there in DC's room? DC has his own room? If I don't stay with him over nite, what is the ratio of nurse to children? I imagined it like the nursery in the hospital when I had the baby.
I guess I'll find all of this out when I go for the consult, I'm just really nervous and don't know what to expect.
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amother
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Wed, Nov 14 2012, 10:12 pm
theres a great doctor in boston childrens hospital (chob) I cant remember his name.. let me check online hold on..sosorry I cant find the name of the doctor. many people travel all the way to boston to see this specialist. you can stay at the rofeh (free housing given by the beautiful bikur cholim organization that is run by the boston rebbe)
good luck
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amother
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Wed, Nov 14 2012, 10:14 pm
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his name is dr mullikan. hes supposed to be an excellent plastic surgeon that deals with clef lips .
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amother
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Wed, Nov 14 2012, 10:17 pm
| peppers wrote: | Thanks Boston amother.
Other amother, my son is 3 weeks old. I heard about an organization called Rofeh that provides accommodations and such for people coming to Boston for procedures.
How much space was there in DC's room? DC has his own room? If I don't stay with him over nite, what is the ratio of nurse to children? I imagined it like the nursery in the hospital when I had the baby.
I guess I'll find all of this out when I go for the consult, I'm just really nervous and don't know what to expect. |
First operation DC was eight weeks old. DC was a preemie. The room for us was large more like a suite with a sitting and bedroom. DC's room also was big with large windows. Absolutely no privacy so I was glad for Ronald McDonald room. The first surgery was delayed hours because of an emergency. The poor baby was hysterical from hunger.
They let Moms go into the operating room without a mask. They always let me do this. Is it more than one surgery. My physician relative found the Dr who was rated best in the world for the type of operation my dc needed. Find the best. I think US News and World Reports rates and is highly regarded.
DC also had two more surgeries after all the reconstructive surgeries for scar removal. I was very aggressive in scar removal and also in finding new operating techniques.
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peppers
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Thu, Nov 15 2012, 10:32 am
Working on getting an appointment with Dr. Mulliken.
As soon as we have an appt date we will look into Ronald McDonald house and Rofeh.
Why did you get a room in Ronald McDonald and not Rofeh?
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amother
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Thu, Nov 15 2012, 6:25 pm
| peppers wrote: | Working on getting an appointment with Dr. Mulliken.
As soon as we have an appt date we will look into Ronald McDonald house and Rofeh.
Why did you get a room in Ronald McDonald and not Rofeh? |
I think the hospital set it up, but I really don't remember. I was pretty overwelmed at the time - not just by this.
My child is so not concerned about any scarring and really has no clue. People often ask if it is a cleft lip. Please let me know if there is anything else.
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calaflower
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Fri, Nov 16 2012, 12:48 pm
Hi, I'm just joining this thread now, I just wanted to let you know I work in a large MFM practice that HIHGLY recommends NYU - we've sent patients there who have had amazing results, and according to the patients' feedback it seems that they are also very supportive, understanding, and caring.
Boston could be great too - I just don't know of them - basically, if for some reason Boston is not feasible for you, feel confident going to NYU  If you are interested, I can find out specific names of who to contact....
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peppers
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Thu, Dec 27 2012, 4:07 pm
OP here.
I am currently on Health Plus through medicaid.
We got in with Mulliken in Boston but found out that he won't take my insurance and getting a different insurance would be way more than we can afford.
To the amother who suggested Barry Zide, how did you do the insurance? His office told me that they don't take any insurance but they give you the form to send in the claim to your insurance after the surgery and you have to deal with getting it covered. How did you arrange that? What insurance did you have?
To Calaflower, which doctor do you recommend in NYU? I have a few different names being thrown at me and am quite overwhelmed.
Thanks for all of your help!
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chocolate chips
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Thu, Dec 27 2012, 10:38 pm
I know a couple who just went through this and another couple who did it 5 years ago.
Both went to Chai Lifeline and they were extremely helpful in all aspects.
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amother
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Thu, Dec 27 2012, 11:35 pm
| peppers wrote: | OP here.
I am currently on Health Plus through medicaid.
We got in with Mulliken in Boston but found out that he won't take my insurance and getting a different insurance would be way more than we can afford.
To the amother who suggested Barry Zide, how did you do the insurance? His office told me that they don't take any insurance but they give you the form to send in the claim to your insurance after the surgery and you have to deal with getting it covered. How did you arrange that? What insurance did you have?
To Calaflower, which doctor do you recommend in NYU? I have a few different names being thrown at me and am quite overwhelmed.
Thanks for all of your help! |
I remember these forms and claiming the money afterward. The Dr's office was helpful. I don't remember much beyond that including what insurance I had at the time. I think your insurance will pay out of network.
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amother
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Fri, Dec 28 2012, 12:12 am
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My son was born with a cleft palette and after doing extensive research I chose to go to NYU with Dr Courn Cutting. Had a very positive experience there, his team is amazing.
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amother
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Fri, Dec 28 2012, 12:13 am
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Same as above amother ...that should read Dr Court Cutting
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amother
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Fri, Dec 28 2012, 8:28 am
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I know a few people who had children born with both cleft lip and palate. They all used dr cutting in Nyu and the results were fabulous!!!!
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