23 Weeks along

[Samm]

Hello all

We are new to this forum, we are about 23 weeks along. My g/f is 40 and in a high risk pregnancy. We see our Dr every month, sometimes every 2 weeks. We also the perinatal Dr, every 3 weeks. We just found out that our son has a Cleft Lip, couldn't see the palate yet. So i am guessing that we will be talking to our Dr, at the next visit and start looking for a team of Dr's to help with the babies surgery to fix the Cleft Lip.

We are close to Atlanta Ga, if you have any info, please pass it along.

We just found out yesterday 4.5.07 and i have scoured the Internet for answers. I am understanding things alot better. My g/f also joined this forum, so I am sure you will be seeing us around.

Thank You

[mookie59]

Hi Samm,
Congratulations to you and your GF on the coming birth of your son!

My name is Jennifer and I have a granddaughter who is now 5 months old who was born with a unilateral cleft lip and a bilateral cleft palate. She is the creation of my son and his GF who have now separated and I am caring for the baby, Taylor.

We did not have any knowledge of Taylor's cleft until she was born. I've often wondered if the acceptance would have been easier had we known by ultrasound and had time to adjust.

We live in North Carolina and our GD is having her care done at Brenner Children's Hospital with is at Winston Salem Baptist which you may have heard of. Her plastic surgeon is Dr. John Thompson and he did an amazing job of repairing Taylor's lip last month.

We will be having her soft palate (the rear of the roof of her mouth) repaired next month. Then the hard palate (the front) will be done when she is around 9 - 10 months old.

We used a bottle called the Mead Johnson which has a long nipple and soft squeezable sides. Although there are several different bottles for cleft babies.

Taylor weaned herself of the Mead Johnson when she had her lip surgery last month and is now using a Gerber sippy cup without the valve.

I wish you two best of luck and please ask any questions you have. Let us know when that adorable boy arrives!

Jennifer
Nanny to Taylor (uclbcp)
5 months old

[jacksmom]

Jennifer, just out of curiosity....what is the reason for repairing Taylor's hard and soft palates separately? We are having our soft and hard palate repaired next week, at nine months. It is so amazing to me how different all of these doctors are.....makes it more confusing for all of us!


Oh , and Samm...welcome to the group! I am sure that you will find lots of info on here that will relieve some of your fears about your little boy on the way! There will be obstacles along the way, but nothing you can't overcome! Good Luck, and we will look forward to hearing about the new baby. Also, I am in Birmingham,Al and we are using Dr. John Grant, he is supposed to be one of the best plastic surgeons in the southeast. So if you don't find anyone in the Atlanta area, it may be worth the drive to Birmingham, just to meet with Dr. Grant and his team. PM me if you want more info!
Allison

[bjand3]

Is there any website where you can look @ different P/S from state to state and find the best of the best?

[dakwegmo]

Samm, my wife and I live outside Atlanta, and our son was born, in October, with a unilateral cleft lip and palate. We were referred to the Craniofacial Clinic at Children's Healthcare of Atlanta (http://www.choa.org/default.aspx?id=249). Dr. Williams is the primary plastic surgeon there and does most of the cleft repairs. So far I've met about a dozen people in the Atlanta area who had Dr. Williams as their surgeon and all of them have been very impressed with his work. I'd have to agree. If you're interested let me know and I'll show you some before and after photos.

[Hilla]

Welcome

Here is our story. There you can see how things have been for us living with a cleft (Hilla has UCLP and she is one-year-old now). http://halkiovave.vuodatus.net

Keep us posted

-Laura

[CJParents]

My name is Sunshyne and my husband and I had a son Carter born with cleft lip and palate. We live in the Atlanta area. We use Dr. Williams and he is wonderful. We have had his lip repaired and are having his palate repaired tomorrow. Dr Williams is wonderful! The lip repair result was amazing. Let me know if you have any questions or concerns or would just like to talk. I would be happy to help in anyway we can!

Good luck!
Sunshyne

[Samm]

Thank you all, i appreciate your words. I will be calling to get an appt with Dr. Williams. We are seeing our dr tmo morning i will also ask him if he recommends anyone else.

We are very excited to be welcoming our son the 1st week of August.

[Babyk]

Hi guys! This is Kelle, Samm's pregnant half!

Thank you all for the information, and sharing your experiences and photos with us!

Needless to say I am a nervous freaking wreck but it has helped to hear other people besides the doctors say everything will turn out okay.

I'll be off work in a couple of weeks so I'll be able to chat more....we have lots of questions!

[gc0447]

For: "Babyk":

Hello. My name is Georgette Couvall (Dr. Salyer's patient: http://www.worldcf.org). How are you? Here is my Personal Story link:

http://worldcf.org/index.php?option=com ... &Itemid=39 (Craniofacial anomalies)

I'm from Illinois. If you don't mind me asking, where are you from? Just wondered.

I wish the best for you and your family.

Sincerely,

Georgette Couvall

[CJParents]

Hi Kelle,
Please feel free to ask any questions you have. I am happy to help!

[sodapop]

Hello Samm and Kelle,
This forum is great for questions of any kind that you may have. My husband and I found out our baby girl would have cleft lip and possible cleft palate at my 19 week ultrasound, so i know just what you have been feeling! If you have any questions at all or just want to vent feel free to email me @ marialouise79@yahoo.com. I live in Washington so I cannot offer any advice on a doctor close to you but like i said, anything at all that you want to talk about i am here! My daughter Vada was born on August 13th 2006, with a left sided unilateral cleft lip and palate(soft/hard). She is the most beautiful thing i have ever seen but i know the emotions you must be feeling. Let me know if you want to talk.

Maria Walker

[Babyk]

Hello again everyone!

Georgette we are in Georgia, south of Atlanta.

We have a meeting with our surgeon on July 12. He is the head of plastic surgery at Atlanta Children's Hospital and is a children's craniofacial specialist. We finally got a pretty good 3-d pic last week.

We have been in touch with several families from here that have used him as well and they have been kind enough to share their stories and pictures of before and after with us.

Wish us luck!

Kelle

[Samm]

We are heading into this final stretch, we visited the Atlanta Childrens Hospital today and met the team. we are very happy with team that is there at scottish Rights.

After Avery is born we will see the surgeon again.

This is all coming full circle, we are terrified and excited at the same time.

I will add pics after the birth.

Thank you to sunshine i am sure i spelled your name wrong and my apologies, but again thank you for your help.

Its nice knowing that there are others in ga, that understand.

[tigerlilly149]

Hi! Congrats on your gf's pregnancy! What a happy time for the both of you!

My son Ethan has a incomplete unilateral cleft lip. His pallate is in tact. At our 20 week ultrasound, the ultrasound technician suspected that our son had a cleft lip/pallate. However, throughout the entire pregnancy, he had his hands over his face. At 34 weeks, we did another ultrasound and it was confirmed that he had a cleft lip. They couldn't see the pallate either. So we hoped for the best. Thankfully, his pallate was fine.

Ethan's surgery is next week Wednesday. He's 3 months old now (14 weeks), and we are expecting great things.

If you have any questions, don't be afraid to ask! I'll be happy to answer them!