Cleft Palate

Hi C.,

I can only imagine what you must be going through right now. My heart goes out to you.

I haven't been through this myself, but I do have a few thoughts for you. I hope they help.

First off, as hard as it may seem, try to take a step back and breathe. I know that this news can be difficult to handle, but with all the medical technology available today, a cleft palate can be fixed. I want you to know that IT IS NOT YOUR FAULT if your baby has a cleft palate. You did nothing wrong, and there was nothing you could have done to prevent this from happening.

Second, prepare yourself for the positive. You said the diagnosis is not confirmed as of yet, so it's possible your baby does not have the condition. Try to remain optimistic.

Third, do some research about cleft palate, and make list of questions for the specialist. I've found a website that has some information about cleft lip/palate that you might find helpful. It is: http://www.cleftline.org/ This site can give you some basic information and perhaps help you formulate questions for the specialists. Try not to get carried away looking at pictures of babies with cleft lips and palates, as that will send you into "what if's" and will only cause you undo worry and concern that is totally not needed at this point.

Fourth: If you can, take someone with you to the appointment with the specialist. You don't mention a partner/husband, but if you have someone you trust to go with you, that might be helpful. Two sets of ears are always better than one in situations like this. Be sure to ask a lot of questions too, and write down the answers.

Fifth: If the diagnosis is correct, then remember to only take it one day at a time. Reach out to your friends and family and to those who care about you. Don't hesitate to let others help you out and be sources of support for you. Ask for help if and when it is needed.

So, that's probably more than you really wanted, so I'll stop rambling. Hang in there sweetheart. Let us knw what happens. You are in my thoughts and prayers.

Hi C.,

My first son was born with a unilateral cleft palate and a bi-lateral cleft lip. He is now 3 years old, has had 3 surgeries and is doing GREAT! He had a surgery on his lip at 11 weeks, his palate at 11 months, and then a lip revision at 33 months. He will need more down the road, but not until his adult teeth come in so they can work on his gumline some. They have awesome doctors up at OHSU (we see Dr. Milczuk). I got him in speech therapy around 18 months and he graduated when he turned 3. I am sure this is very hard for you to find out (mine was a delivery room surprise), but take it from me, it isn't really that bad. I think the worst part has been the anticipation of the surgeries, but he recovers so quickly it is amazing (eating the first day after surgery) I'd love to talk to you about it more if you want to contact me personally. I also have a bunch of Haberman feeders (special bottles for babies with a cleft) if you want them. I'm going to try to send you a personal message, but not for sure how to do that. If I can't figure it out write back to me here and I'll just post my email.
~ Celena

I've been studying the undergrad pre-audiology/pre-speech therapist degree. Cleft palates are a common issue because in some cases - if they are severe - they can make speech difficult or cause infections.

That being said, they are normally very simple to fix with surgery shortly after birth and the child can go on to live a normal life with normal development. In most cases, if it is dealt with shortly after birth, any affects on speech/infections etc.. will be completely avoided.

Don't be afraid. Just keep up on what the doctors can figure out and see what the specialist says. Then, make as many arrangements as you can to have it fixed as soon as possible after birth. Your baby will be fine, beautiful, and everything will be fine.

My ex-s sister's daughter had a very severe cleft palate. Apparently a simple surgery will correct the problem. After they operated, she was good!

Try not to worry, C., ''''might'''' means just that - and of all the errors that sometimes make a childs' entry more complicated --- In this country a cleft lip would likely be ancient history ( if it happens at all) when your child starts kindergarden---. I promise - one step at a time - you'll get through this -

Blessings,
Jud aka- Old Mom

The boy I babysat growing up (he just graduated from high school) had a cleft palate...I started to babysit him when he was 4 months - he had a few surgeries growing up (one to replace the bone, others purely cosmetic) - today, you can barely tell...

This is another good reason for not doing routine ultrasounds in pregnancy! So much unnecessary worry, when you could just be enjoying your pregnancy. As other moms have written, cleft palates are easily correctible and not a cause for concern. And your baby may well not even have one. I would suggest that you talk with your baby, acknowledging that you have been worried (because he (?) can feel it anyway - acknowledge it as YOUR worry, and that it is not about him) and reassure him that he is fine and that you will always love him and care for him no matter what. I would recommend that you not do any further ultrasounds or testing unless there is a very clear and specific benefit that could come from doing so (for example if there were a lifesaving surgery that could be performed while the baby was in utero) - otherwise all the testing just creates unnecessary worry (and is potentially harmful to the baby). Otherwise, you could prepare yourself for the possibility by learning more about breastfeeding a baby with a cleft palate, and do everything you can to have a natural birth without intervention, which will help greatly with breastfeeding. Personally I advocate home birth and would recommend researching the options in your area, or a freestanding birth center.

My niece was born with a cleft palate and she is perfect. And her's was classified as severe. She has had to have several surgeries (and will have to have more as she gets older) but is a happy and very healthy 2 year old. There is so much support out there for parents in your situation! Please don't be discouraged! My niece has had all her care and surgeries at Dornbecher Children's Hospital, they are so good and will answer any questions you might have. Good luck and try not to worry so much (even though its hard not too)!