SMILES

Hello all I am new. My name is Brandon and my wife and I just found out that our 3rd child (we are getting ready to have) has bi-lateral cleft lip. One side is complete they think and the other is incomplete, they think.

My question to those that had a follow up 3D sonogram, how much were they able to tell and to what extent were they able to tell about the severity of the cleft lip and if they baby has a cleft palate as well??

Thanks

Dear Brandon (Bjand3):

Hello. My name is Georgette Couvall (Dr. Salyer's patient: http://www.worldcf.org). Welcome to the group. 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

When I was five months pregnant I had a 4d ultrasound they somehow could see the palate wasn't there. They should tell you if they are concerned or if they noticed it wasn't there. They tell you that you wont know how severe it is until you have the baby. I expected the worse but when they are born you wont even care about that. My son had bilateral cleft lip and palate, an extra finger and toe. Don't be surprised if it has extra digits it's common with cleft. And get this the ultrasound only showed 10 fingers and ten toes.

Hi Brandon, My daughter was diagnosed with a unilateral cleft lip and bilateral cleft palate. I had a sonogram every month until she was born and nothing had changed. Unfortunately she had actually had a bilateral cleft lip and palate. You never know though. They said they usually aren't as severe as expected. Once you do have your baby, you will find that this forum is a GREAT resource. There are a lot of helpful people on here. Carrie:)

Brandon,

Please don't worry about other deformities. Just b/c they have a cleft doesn't mean that they will have other issues. We didn't know if Dino's palate was intact or not. We had to wait until birth. My son's cleft looked alot worse on the U/S. I was expecting the worst and everything has worked out great. I was so worried, I look back & think I can't believe I let it consume me like I did. Focus on the baby health for now. The clefts can be repaired which is a wonderful thing. When is the baby due?

Brandon, congrats on your new addition! I agree with April, try not to let this news consume you and definitely don't let it steal one minute of your joy! There are far worse things than clefts! You are lucky to know ahead of time and to be able to prepare yourself. There will be obstacles to overcome, but nothing you can't handle! This website will be such a good help. I have gotten so much advice and encouragement from the friends I have met on here. We will look forward to hearing from you when your little one arrives.
Oh....and to answer your question, our son's cleft palate was not detected on a 3D ultrasound that was done specifically to check for that. We were told that it appeared to be closed, so I wouldn't rely too much on what the ultrasounds say.
Good Luck!
Allison

Thanks all for the response. We live east of KC, MO about an hour. So we are going to St. Luke in KC, and we will have a follow up consult @ Children's Mercy in KC as well.

It is hard to say that it has not consumed both my wife and I. We have a 4 1/2 yr old and a 22 month old, and "Emma" is due @ the end of August. My wife is a scheduled c-section, so I guess it does simplify when she will come.

My goodness I did not realize that it is common to have 5/10 fingers and 5/10 toes on an ultrasound and then have more @ birth.

I guess we just have so many questions and have so many thoughts going through our heads that i do not even know where to start.

I am glad I found this board for the information as well as others whohave been through this before.

One question I can think if now is we have another 3-D u/s on May 22 and will meet with the plastic surgeon, and others....any really important specific things to ask them? I have read that most lips are done within 3 months or less...is that true for most? and most palattes are done within 9-18 months..true??

Brandon

Hi Brandon,

Welcome to the group and congratulations on you and your wife's soon to be very busy household. Our little girl was born with a complete bilateral cleft lip and palate in January 2006. It was not detected prior to birth and perhaps it was easier to go through all the worries when we had her to hold.

For us, we met with the plastic surgeon right in the hospital that first day and he briefly outlined the surgeries and tried to tell us not to worry. It was difficult but the hardest thing initially was trying to figure out how to get her to eat, i.e. what bottle to use and to pump because bf was not an option for us. We met with the dentist the next day and she fitted our daughter with a feeding appliance (something to push the bottle nipple against with her tongue. We also did "taping" to stretch her lip prior to surgery. Some plastic surgeons seem to want this, some don't.

Our little one was little, so we had to wait till she was ten pounds for her lip surgery (5 months). I think most surgeons use the 10 pound mark and try to get the lip done as soon as possible, so your timing may be based upon this.

As and update and to let you know that all will be fine, our little one is now three months post op on her palate surgery and is doing well, the lip surgery was remarkable too. Take plenty of pictures because after they come back from that first surgery they look so different, still beautiful.

In closing, I have found this group to be so supportive. Those first few days I read all the old posts and stories, it helped me to realize how fortunate we all are.

Heide

I have a cleft lip and palate, so I was looking for it when I was pregnant. I had 4 3d ultrasounds and all of them told me a complete unilateral cleft lip and unk palate condition. My son had his hands in his face all the time. He still does at 4 months old. When he was born my husband and I were really shocked to see bilateral cleft lip and palate. What was really great was none of them (even the palate) were complete. Now that I look at the ultrasound pictures I can see what we missed. I took a good face picture and gave one of the good ultrasound pictures to the ultrasound tec that did mine so she can learn how to better spot cleft lip and palates.

Sounds like from what I hear the u/s, even the 3D and 4D are not real accurate. We have our first in depth 3D u/s in one week, and hopefully her palate shows intact, but we will see.

Has anybody Dr.'ed in the Kansas City and/or St. Louis area? If so any reccommendations on plastic surgeons?