I have a BIL CL&P and our son will, too...

[KeepSmilin']

Hello! First things first. My husband and I are expecting--in July! I'm 15 weeks along. We are thrilled and we've found out that he's a BOY!!!

Ok, now for some other details....I was born with a bilateral cleft lip and palate. And naturally curly blonde hair and brown eyes and a WICKED sense of humor. Now that I'm pregnant, when we went for our first trimester ultrasound, we asked the doctor to look for the cleft, and he did find it. He spent a lot of time looking, zooming, etc. (which is one reason we were able to find out he was a boy so early! ) and he said it looks as though he has a bilateral cleft lip AND palate. I know it's difficult to spot the cleft palate on the ultrasound, but, that's what he said it looks like so we're just going to count on that for now.

My mom and husband were with me for the ultrasound, and I know this brought back lots of memories for my Mom. I'm so glad she lives very close by, so that she can give us lots of advice and help.

I'm 34 years old, and as I'm doing research, I'm learning that a lot has changed since I was a baby, and some things seem to be the same. The Haberman Feeder wasn't around when I was a baby, and when I showed it online to my mother, she said she thinks that devices such as this will really go a long way in helping with feeding when our son is born. She said feeding me was a 24/7 job.

So, here I am. I'm hoping I can be of some help to parents with kids with clefts, in giving some perspective on the "outcomes" as an adult, and in offering reassurance that your love is the MOST IMPORTANT thing you are doing to help your child. I've read lots of posts here and there's a LOT of love and support here and that is awesome My parents did a terrific job of getting me the very best possible care, and above all, their attitude that I was just a normal kid has had a great deal to do with my self-esteem and confidence I married my college sweetheart, I am living the life I've always dreamed of, and I'm expecting my first child. Doesn't get much better than that.

I'm also here to gain some advice, support, suggestions, etc. on how to give our son the best possible care. It's funny in that by the time I was old enough to really have an awareness of myself and the world, a lot of my surgeries had already been done. It was my parents who had a much harder time of it, is my guess. So I don't know what it was like to feed me, hand me over for my first surgery as a 6-week-old, etc. What I do know is that I was born with some differences and my parents did whatever was necessary.

It'll also be interesting to talk to other adults with cleft lips and/or palates, too. It's not something I've spent a lot of time talking about--or even thinking about, really, for years. Now all of a sudden it's come to the forefront again. And life goes on.

In case anyone's interested, here are some photos of me, taken this past summer. (I'm in glasses in one of them because I went surfing with my contacts in and nobody told me that you can really hurt your eyes that way) But I'm including them to give you a sense of how things can turn out. I don't have any photos of me as a tiny baby, before my surgeries, so I don't have anything to compare and contrast. But you get the idea.

[Linda S S]

Welcome and congratulations on your pregnancy! I have a niece born with UCL.
Linda S S

[Jeff Alterman]

KeepSmilin':

It appears from the photos that the repair to your bilateral cleft lip and palate was pretty good. The scars don't appear to stand out too much and your teeth look pretty good too. I wonder if your speech was noticeably affected.

As for your future son, the surgeries will probably be better for him than it was for you and the scarring should be less noticeable. Since you're already experienced in dealing with a cleft lip and palate, you should be able to find out who will do the best surgery for your future son and hopefully the resulting repairs should turn out fine. You'll probably have an easier time feeding your son that your mother did with you since more items are available for those with a cleft palate these days. It might not be easy for the first few months, but once the palate is repaired it should be somewhat easier.

Good Luck!

Jeff Alterman at alterman156@verizon.net

[wcs40110]

You look great! I'm sure you knew that thought. My daughter only had a small cleft in her lip so I'm not much help with the feeding. My biggest problem was 'Whats wrong with her lip.' I just told people nothing, that she has a cleft and apparently it's genetic, my grandpa had one too. That usually shushed them. They usually told me shes beautiful anyways. I think it's nice to know ahead of time and that you'll be there with first had knowledge for you baby that's awesome too! Best wishes on your pregnancy and keep us updated!

[jacksmom]

Our stories sound very similar. My husband had a cleft, and it wasn't even something his family talked about until his late teen years. His Mom was told that the cleft wouldn't be genetic, that it was caused by a medication she took during pregnancy. So, we were a little caught off guard when our son was born with a cleft. My mother in law was amazed at how things had changed! She fed my husband every 2 hours around the clock with a medicine dropper! Then she says he would spit most of it up!
We tried both the Haberman feeders and the pigeon feeders. I preferred the pigeon feeders (they are MUCH cheaper!) But of course Jackson preferred the expensive Haberman's. We had relatively few complications, mainly just struggled with really bad reflux, and fluid on his ears. Handing him over for surgery was always tough, but we made it through! Our biggest issue now is speech. He is 19 months, and still not making any words. We are having some testing done this week to make sure he doesn't have any additional issues going on. This website has been a great resource for us. Be sure to keep us posted. Having an adult with personal experience is always good, and I would love to hear any input on speech issues that you may remember. Good luck with your new little boy!
Allison

[KeepSmilin']

Thanks so much for all your supportive posts.

Allison--hope the testing goes well. About speech issues--I had speech therapy at a couple different points in childhood, mostly in pre-school and early elementary school. Before I even started school, I think our local "Intermediate Unit" which I think was the school district? but I'm not sure? arranged for a woman to come to our house and work on speech therapy with me. Then when I started school, I would spend maybe 1/2 an hour one morning a week with someone at the school on my speech.

What stands out the most with these memories that I have--with speech therapy and all the specialists I saw over the years--was that these people were very friendly and made all these check-ups and things fun for me as a kid. I'm sure that they were also very skilled but what came across to me at that age was that this was all fun. Hopefully your husband had a similar experience. More than anything, I remember enjoying all the extra attention I got

Later on, when I was about 12 or 13 years old, I had a speech therapist who worked with me on a technique that she called "the light touch". It's a way of keeping your tongue forward up against the back of your front teeth and pronouncing consonants like "t" lightly. I think that eliminates a lot of air escaping up the nose when speaking, which in turns eliminates a lot of the nasal sound when speaking.

Hope that helps. Obviously you'll get better info if and when you talk with speech therapists. This was just my recollection of my experience.

As a funny side note, I remember I was about 4 years old and my speech therapist was working with me on the letter "g". She wanted me to say the word "gasoline". So she said, "So when you go with your Mom to the service station, she pulls up to the pump and says, 'fill it up with _____' " and I was so excited because I knew the answer, and I yelled, "UNLEADED!!!"

Guess ya had to be there

[sunshine_81]

Hi...

I'm really glad to know that someone with cleft can be brought up to a beautiful adult... so cheerful and positive...

I've been quite worried that my daughter will end up blaming me for bringing her into this world when she grows old. Apparently it doesn't run in our families. Thus we took it really hard when we realised that she is born with a cleft palate.. She is now a yr old and learning how to speak & walk.

You have shown me that it can still be done, living in this beautiful world positively though you have gone through so much.

Thanks.. I will continue to try my best to be a good parent....bringing joy and happiness to my kids..

[mrobida]

First, congrats on your pregnancy! And as others have said, you look fantastic!
I just thought I would give my two cents about feeding choices. We used the Haberman with our daughter (cleft palate) because that is what was given to us at the hospital. We had a lot of trouble with the nipple getting stretched out and too much milk coming out, resulting in alot of reflux. We were going through about a nipple every week or so, and at a cost of $10-15 per nipple, that adds up. We went back in to see the therapist to see about other feeding options around 4 months but I think by then, our daughter was set on the Haberman. I have heard others say that the pigeon worked well for them with less gas/burping problems than the Haberman. Since you know about your baby's cleft ahead of time, I would suggest maybe getting one of each type and then trying them both in the early days to see which one works best for you.
And, yes, this board is a terrific place for advice, support, and knowledge.

[KeepSmilin']

Hi...

I'm really glad to know that someone with cleft can be brought up to a beautiful adult... so cheerful and positive...

I've been quite worried that my daughter will end up blaming me for bringing her into this world when she grows old. Apparently it doesn't run in our families. Thus we took it really hard when we realised that she is born with a cleft palate.. She is now a yr old and learning how to speak & walk.

You have shown me that it can still be done, living in this beautiful world positively though you have gone through so much.

Thanks.. I will continue to try my best to be a good parent....bringing joy and happiness to my kids..

Thanks so much for your kind words.

This must be such a fun time, watching your daughter learn how to speak and walk. Right now I can only imagine what those times will be like with my son--we have a lot to get through between now and then but I'm looking forward to those times.

I can only speak from my experience, but, my advice to you is: DON'T worry for even a second that your daughter will "blame you" for bringing her into this world...no way. I mean, if she's anything like I was as a teenager, she'll blame you for LOTS of things--but not for bringing her into this world She'll blame you for stuff like not letting her go out on a school night when she has a test to study for the next day, not letting her go to the party down the street at the kid's house where the parents are out of town, you know, IMPORTANT stuff like that

And when she's an adult, maybe as she's preparing to be a parent, she'll look back and realize all the care and love that you gave her--and she won't blame you, she'll be that much more thankful that you were THERE for her.

[KeepSmilin']

First, congrats on your pregnancy! And as others have said, you look fantastic!
I just thought I would give my two cents about feeding choices. We used the Haberman with our daughter (cleft palate) because that is what was given to us at the hospital. We had a lot of trouble with the nipple getting stretched out and too much milk coming out, resulting in alot of reflux. We were going through about a nipple every week or so, and at a cost of $10-15 per nipple, that adds up. We went back in to see the therapist to see about other feeding options around 4 months but I think by then, our daughter was set on the Haberman. I have heard others say that the pigeon worked well for them with less gas/burping problems than the Haberman. Since you know about your baby's cleft ahead of time, I would suggest maybe getting one of each type and then trying them both in the early days to see which one works best for you.
And, yes, this board is a terrific place for advice, support, and knowledge.

thanks for the support and for the info re: feeding choices. this is really helpful!

Here's a question--where do I get the Haberman and the pigeon? My guess is that at some point the hospital will give us a couple samples of these things, but, after that, once we settle on what works best for him, where would we get these on a regular basis? Thanks in advance!!