new here- lots of questions/confused

Children and adults with cleft lip and/or palate issues

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new here- lots of questions/confused

Postby mia's mom » Thu Jul 05, 2007 10:16 pm

Hi there- my daughter Mia was born on May 31st of this year with a total cleft of the hard and soft palate. It's unclear to me whether she has Pierre Robin sequence - the doctor's mention it but no one has come out and said she has it. She has a small recessed chin and because of it, has difficulty breathing. It's overwhelming for me but its getting easier with each passing week. She has her complete jaw/gums in place and no cleft lip issues.

I feel so confused about all of this. I don't think mia's pediatrician ever had a cleft palate patient- he really doesn't provide too much info. I just want to know what I can expect in the future- is she going to have speech problems, hearing problems, dental problems? anything else? what are the types of issues kids with cleft palates may face? I feel totally in the dark and that I am just relying on doctors who aren't telling me anything. No one has explained to me what may happen in the future- does anyone out there know?

Also, I feel so much stress to pick the right PS. We met with two- one that has an excellent reputation, does these surgeries all the time and volunteers to do them out of the country, who is not connected with a "team", and one who has the same reputation and experience who is with a team. Both seemed okay although I wasn't too impressed with the rest of the team members for the one PS. How do you pick- I feel like if I pick wrong my daughter will pay the price and it will be all my fault. I live in the Schenectady/Albany, NY area and the two that I am referring to are Dr. Noonan and Dr. Patricia Fox. Like I said, both seemed great- the hospital where I delivered and Mia's pediatrician recommended Dr. Fox, my doctor and others recommended Dr. Noonan. I can't get an accurate "gut feeling" because I'm so worried that I'll choose the wrong one. Any advice?

This has been a long message. I appreciate it very much to anyone that read through the whole thing. Thanks, Sandy
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Postby jacksmom » Fri Jul 06, 2007 7:56 am

Sandy, Hi! Welcome to the group. First of all, let me tell you that my husband who is 37, was born with a cleft palate, and he has NO issues now. He has perfect speech, and you would never know he ever had a problem. Secondly, our son Jackson was born with a cleft palate in June of 2006. I felt exactly like you at first. Everything was so overwhelming! My pediatrician was NO help at all, and every question that I asked him, he just told me to ask the PS. We also met with 2 plastic surgeons, and after several weeks of prayer and talking to others, we finally felt like we knew which one to pick. So all I can say about that is to give it some time, and you will know which one is right. Jackson had his palate repair in April, and now he is doing wonderful! He has already started saying Mama, Bubba and Bye-bye. He tries to say Dada, but it sounds a lot like bye-bye! Jackson did have hearing issues when he was first born, but at 12 weeks he got tubes in both ears, and he has passed every hearing test since then. My advice is just to relax and enjoy your little one. I feel like I wished away so much of Jackson's life worrying about his cleft and wanting his surgery to be over, and now he is a YEAR old, and I can't believe it! Oh, and we also found a new pediatrician, which has helped a bunch! He knows a lot more about clefts and has been much more helpful. Hang in there! A year from now, it will already seem like it wasn't so bad! Message me anytime if you have anymore questions.
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Postby samjune79 » Fri Jul 06, 2007 8:51 am

As far as picking the doctors, I had a hard time too. I wanted to use the PS that did my last surgery for my son (born 1/20/07 with CL/CP). That PS only took my Health Insurance and the other PS took both mine and my husbands Health Insurance. I knew I was going to quit my job after maternity leave (after Kyle's Surgery) so didn't want to switch PS or pay out of pocket so I set up an Interview with the other PS that I didn't know. Well, turns out that his mentor was my original PS when I was born, so I got all warm feelings for his PS after we meet, but really the Health Insurance played a major role. You are more than welcome to take a look at MySpace page at http://www.myspace.com/willsamantharosario
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Thanks so much for the replies

Postby mia's mom » Sat Jul 07, 2007 11:57 am

Thank you so much. I nearly cried reading your responses- only because I am speaking to people that are going through or have gone through a similar experience. Thank you also for sharing your pictures. Your kids are beautiful.

Allison- you're right about enjoying each day. I didn't realize it but I am going through each day trying to get through and make it to 1 year. Just yesterday I said "good she is in size 1 diapers instead of newborn so she's getting older and closer to her 1 year mark" I don't want to do that anymore. Each week that passes gets easier.

I have one more question but will post it as a new topic if no one sees it in this reply- did you limit your child's exposure to others so that he didn't get sick? We haven't gone and had her pictures done and we wanted to throw a christening party for her in september but the pediatrician said to try to avoid getting her sick. Thanks, Sandy
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Postby jacksmom » Sat Jul 07, 2007 3:53 pm

Sandy, we didn't limit Jack's exposure to others any more than a normal baby. He started daycare when he was 4 months old (part time). He has a had a few colds and ear infections, but having a cleft palate didn't really make it seem any worse than when a normal baby gets sick. He had several ear infections, but that was just from the fluid building up in his ears. From what I understand, a lot of cleft babies have that problem. Once we got the tubes, he was fine, and he has only had a couple of infections since then. You're right, each week gets easier. Once we found a way to get Jackson to eat, and he started gaining weight, I felt much better! Hang in there!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Postby mia's mom » Sat Jul 07, 2007 7:16 pm

Thanks Allison- I was so concerned that a cold would be so much more awful for her than with my son. Thank you so much for responding! I guess I have a party to plan :D ...Sandy
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Postby jacksmom » Sat Jul 07, 2007 9:54 pm

Plan a BIG one...these babies deserve it! :lol:
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Postby heather » Mon Jul 09, 2007 10:26 am

Hello and welcome to the group. I first want to say that you are completely normal for feeling the way you do. We all felt that way at the beginning. But as time went by we all got more and more comfortable with the clefts, as did our babies. They get used to their "condition" and learn how to adapt. You'll see that for yourself in time.
My son, Eyson, was born in November with unilateral cleft lip and bilateral cleft palate. He has since had one surgery to repair his lip and I must say that the surgeon did an exceptional job. He looks absolutely marvelous. So handsome. As far as the hearing and speech problems, he is currently deaf in one ear but that will be fixed when he has his palate repaired. He can only say mama right now but once the palate is repaired I'm sure i won't be able to keep him quiet. A speech therapist will probably be required just to help them catch up and with pronunciation. But I figure if it helps them then I'm okay with it. Babies with clefts through to their gums usually have some missing teeth. Eyson's cleft is in his gum so he will be missing a few teeth until they do his bone grafting surgery. Once that is done he will be fitted with partials. Surprisingly he is cutting two teeth in the front that his doctors said he may not have. I'm so excited about that. His pediatrician is excellent. She works closely with his surgeon. Any question that I have she answers and if she can't answer it completely she calls the surgeon and gets me the right answer. Picking the doctors is hard but whichever one you go with you should trust completely. See if the surgeons have pictures of their work that you can look at. Just seeing the outcome will help put you at ease.
I would highly recommend using a children's hospital for her surgery. I have found that they are just so much more attentive to your child. Do as much searching on the Internet as you can to find out more about clefts. I did and it helped me out greatly. Eyson is now 8-months-old and crawling around, eating food, playing with the other kids just as he should be. Don't treat your child any differently than other children. They are perfect. They have to be because that's they way God made them. I wish you and your daughter well and God bless. Heather

Here is Eyson before surgery:
http://s142.photobucket.com/albums/r117 ... months.jpg
Here is Eyson at 7 months:
http://s142.photobucket.com/albums/r117 ... egrass.jpg
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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Postby mia's mom » Mon Jul 09, 2007 7:34 pm

Heather- thank you so much for all the information...and the pictures of your beautiful son. He looks great (both before and after the surgery). It's been such a godsend finding this site. Again, thanks. Sandy
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Postby chicka-monkey » Tue Jul 10, 2007 10:42 am

Hi and welcome,

Make sure you get on a cleft team. They will have all kinds of drs. there to provide you with answers you need. They will have an oral surgeon because your child will probably and most likely have dental issues. They have an ENT which might want to pur ear tubes in his ears for the first 1 1/2 years until something in the ear matures. They have a speech therapist which can help you advise you about any speech problems he may have eventually and she can help you with any feeding problems.

Your state should also have a free government run program for children with disabilities & cleft qualifies. Something like Early Intervention or Help me Grow are some examples. You can also see if there is a government thing for children's with disabilities that will pay for anything your insuance doesn't pay for. Ohio's is called BCMH. Bureau of something Medical handicaps.

We also didn't keep Skylar away from other children or even going out. I was proud of how my baby looked before her surgery and took her everywhere. I got stares & some nice comments. The only thing she ever got was chapped & bleeding lips & gums from having her lips open all the time.

Here she is before surgery:

http://img365.imageshack.us/my.php?imag ... 079yz7.jpg

Here she is now.

http://img165.imageshack.us/my.php?image=8094yf3.jpg
Carrie (user name chicka-monkey)

DD - 6/9/96
DS - 7/6/04
DD - 11/3/05 ~ bilateral cleft lip & palate ~
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Postby mia's mom » Sat Jul 14, 2007 11:02 pm

Thanks for all the info Carrie. Your daughter is beautiful. I was waffling back and forth between the PS that was part of the team and a PS that was just on her own. Considering all factors (I hate the hospital that the independent PS will have the surgery at), I think we're leaning towards the team approach.

Thanks for your input on taking my daughter out. My pediatrician made it seem like we should try to avoid crowded places, other people, etc because of how bad it would be if she got a cold. We were even planning on doing halloween and christmas pictures in September. It's good to know that we don't hve to keep her in the house all the time! Thanks, sandy
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