cleft palate anyone BTDT?

[megs4413]

at our ultrasound today, the doc told us that our baby (BOY, by the way) has cleft palate. I'm looking for some support from other Moms who have been there, but am a little afraid of googling and learning things I don't want to know....I just want to know what to expect, how to handle things, how to tell people, etc.....any advice is appreciated! TIA!

[Wife_and_mommy]

No advice on the cp but congratulations to you on finding out it's a boy!! :)




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[elliput]

No actual BTDT, but here is a good resource. http://www.cleftline.org/

[The Review Mommy]

Just wanted to send some virtual (((hugs)))

I really don't know that much about it from a parental side but my Father has it and he is one handsome man lol! I'll try to find a pic...

Looks wise he is fine. He had to have a series (?) of operations as he grew up to resolve this. It got better and better each time. He was a cute kid and has some wonderful cheesy smile pics. We have never really talked about it before because he just seems so normal to us. (I'm just trying to remember any and all things I've heard over the years while growing up) He has a light scar between his nose and mouth still that he covers up with his red mustache lol! :)

My DH and I have been watching The Office on TV and the main cutie (Jim) has it as well.

Sorry I could not offer more help to you. Maybe there is a website your Doc could recommend that isn't TMI?

Rebekah

[scoop22]

I don't have much advice for you but I have a cleft lip and palate. My mom and dad went through this years ago with little research. There are tons of sites out there. I would ask your dr. which ones they recommend. like pp many people are so good about not pointing this out.

depending on your location, you might want to research doctors. my mom and dad took me hours away from our small town just to have good doctors. they did a nice job. there might even be some support groups at these hospitals or in your local town. i went through many surgeries. i don't remember a thing. my mom said it was hard on her. she had her family there for her. she never joined a group and she wishes she did. The way things are now, there are many kids that have this and people can't tell. through school i had to go through speech class. this varies from child to child. it never held me back academically or physically. There are many cases.

your son will be just beautiful no matter what. boys are so much fun to have around..
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[kristenk]

I was going to post the same site. It looks like they have a good FAQ list. Here's a link directly to the FAQ: http://www.cleftline.org/publications/newborn.htm

Congratulations on finding out it's a boy!

[oliviasmomma]

I PM'd you! :)

[MartiesMom2B]

Congratulations on the boy. My husband's family has a history of cleft palate & lips so we had to have ultrasounds to check for it. I'm actually getting another one in my third trimester to check for sure. I would look for on-line resources and perhaps talk to your pediatrician to see if they can offer some advice.

-Sonia
Mommy to Martie
& Li'l Girl Bunny to come Feb. 2007
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[jd11365]

Congrats on your boy! You knew it from the start!

Step away from the Google, that's for sure! That's my only advice to you. Stick with BTDT from other mamas.

[saschalicks]

I just wanted you to know that I give you so many hugs.

My younger brother, who is 8 years younger then me was born with cleft, lip and palate. It was a shock when he was born b/c back then you found out when the baby was born. My parents had to do major research while in the hospital recovering from this news. My brother had his first surgery at 10 weeks. I just want you to know my brother is 22 years old. In the first 18 years of life he had 12 surgeries. NO ONE can tell, people think it's a scar from falling down as a kid. I remember every surgery, and I know how hard it was for him, my parents and for us. In the beginning my parents would be gone for a week in the hospital with him.

I just told my dad about it and he said how great it is that you know now. Do research to find the best plastic surgeons and ENT doctor's in your area. My dad says to call the Children's Hospital in your area and find out what their protocol is.

My brother is a brilliant man who got straight A's all his life. Went to UC Berkeley and double majored and graduated with a 3.7 GPA. He's now at UCLA getting a Master's in Urban Planning. I remember him still at 2 years old being the happiest kid ever. Just know it will be OK

PLEASE feel free to PM me, and I'll be happy to connect you with my brother and/or my parents.

[MonicaH]

Megs,

I just sent you a PM...just moved away from St. Louis but I think I have a little insight to offer.

Monica

[Tondi G]

I don't have any personal experience but know a mommy who had a son with a cleft lip and palate. I remember her saying that feeding was a little more challenging and dealing with the surgeries was hard (since it was her "baby") but that what they know and can do today is amazing! If you are planning on Breastfeeding get in touch with a Lactation Consultant that has experience or has dealt with cleft palate babies!

CONGRATS on your baby BOY and Good Luck

~Tondi
Mommy to Mason 7/8/01 and Aidan 5/4/05

[deenass]

I don't know anything about the cleft palate issue ... just wanted to say YAY! It's a boy!!

[bubbaray]

No BTDT experience, but it sounds like some people here have been able to give you some encouraging advice -- what a great community!!

Good luck and congrats on the boy!!! :)


Melissa

DD#1: 04/2004

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[cmdunn1972]

I don't have any real advice, but I have heard that treatments and outcomes have improved a lot over the years. StL has some great children's hospitals, as I'm sure you know, so just from that I would assume your DS will be well taken care of.

(Edited to be less location-specific)

[heather_c]

Congrats on the baby boy! My good friend's daughter was born with a cleft palate. She looked perfectly normal, and her parents did not know anything was wrong until she was not gaining weight at her 4-5 day old appointment. The cleft palate had caused her to be unable to get a good suction on the breast, so she had lost some weight. She was then diagnosed.

My friend exclusively pumped for her daughter and then fed her with a Haberman Bottle (http://www.medela.com/NewFiles/specialtyfdg.html#haberman). The baby was always a little underweight, so they added some powdered formula to the BM to add some additional calories. She had surgery at 10 months to close the hole and then she had to wear a brace to keep her hands away from her mouth until it healed. She is now doing well at 12 months.

My friend learned alot and gained alot of support from the following group: http://health.groups.yahoo.com/group/cleftchat/ I hope this information helps you. If you would like to email with my friend, please PM me and I can get her your information.
Heather

Matthew - 9/7/05

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[TaChapm]

Congratulations on the BOY!!! They are so much fun! I don't have any advice on the cleft palate but I am sure you will get some great advice here. Sorry your little guy is going to have to go through this!

Tara
Mommy to Jackson 11-10-02
Tyler 6-9-05
& Baby Jaci 8-10-06


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[maestramommy]

No advice on the cleft palate, but congrats on a boy!

[Thatchermom]

I know absolutely nothing about cleft palate, but I wanted you to know that you will surely be in our prayers! And congrats on the boy - having a son is a wonderful adventure in learning about men for a mom!

[Thatchermom]

I know absolutely nothing about cleft palate, but I wanted you to know that you will surely be in our prayers! And congrats on the boy - having a son is a wonderful adventure in learning about men for a mom!

[erosenst]

I usually don't post when the information I have is so vague - but make sure that the information you have is pretty current. A woman I used to work with had a son born with cleft lip and palate in the last 10 years. (I've lost track of time.) I didn't know her at the time, but I remember her commenting afterwards how thankful they were that they lived in NYC, as the leading research was being done there (available there? - as I said, fuzzy on the details) and they had surgery very soon after birth. I know by the age of 4-5 (perhaps sooner) there were NO remaining indications that he had been born with that. Had he had the surgery later, there would have been more complications, and likely some lasting effects.

Good luck - and congrats on the boy!

[sdrew99]

Congrats on your baby boy!

I've never posted here, but I really wanted to respond to your post! I have a 6 month old little guy who was born with a cleft lip. We were told during our 20 week u/s that he'd have a cleft lip and palate, but we were thrilled to find out when he was born that it was just his lip. Was your doctor definitely able to see the cleft palate?

With just the cleft lip, I was able to nurse Adam right away and with a little bit of work with my LC, he did great and we are still nursing today, even through his lip repair surgery. Here are a few places that I got a lot of support and help:

www.cleftadvocate.org - their friends and family connection was a lifesaver

http://messageboards.ivillage.com/iv-ppcleft - I'm a member of this board, too, and got some great advice.

I know how challenging it must all seem right now - believe me, last year at this time I was in your exact same position. If you have any other questions, please feel free to PM me!

Stephanie
mom to Sydney (3) and Adam (6 months)

[ribbit1019]

Congrats on having a boy!!!
Hugs this must be stressful for you. You've gotten a lot of good responses though. :)

Christy
Wife to Richard
My Waterbabies
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[smilequeen]

My best friend had a little boy in May who was born with a unilateral cleft (lip and palate). He just had his first surgery last month. She has a blog I can email to you if you want to see what a current case is like. During my residency at Children's I was on the cleft palate team from time to time, and things have changed even just since then (that was in 2000-2001).

[megs4413]

actually he said he "thought" it involved the palate, but the baby was not cooperating very well at all. he was snuggled against the placenta the whole time and would never turn fully to look at us. i hope to learn more at our next u/s in 3 weeks. it would be my absolute dream to find out that he just had the cleft lip and the palate was not involved, but i'm just preparing for the worst and hoping for the best. I will check out cleftadvocate. thanks for the info...i may PM you....

[sdrew99]

Definitely feel free to PM me...I know that when we found out about Adam, I was desperate to find pictures of what babies looked like before and after, just to get used to how he was going to look. I know it sounds crazy, but there are times I really miss his clefted smile! I cried after surgery because he didn't look like my baby any more. I also have 3D ultrasound photos of Adam that we had taken at 30 weeks or so that show his cleft really well that I can send you. We did just what you said...prepared for the worst and hoped for the best. Nothing is 100% with u/s and it's really hard to see the palate.

Good luck to you, and again, feel free anytime to email me. :)

Stephanie