Anyone have a baby born with cleft?

Question

I am 8 months pregnant, and as time gets closer to my due date.. I am really starting to freak out. I found out through ultra sound that my son has a unilateral cleft lip. I have looked at several photos on line, and I have done alot of research on the condition. The time is getting closer, and even with all the knowledge that I have I am getting really nervous!

To those that have had a baby with this condition what is it like when the baby is born? Is there any way really to prepare yourself? And what emotions do you have to face? Thank you so much.

Answer 1

I'm in Australia and although I can't answer your questions know they have a support group for it here:

http://homepage.powerup.com.au/~cleftpal...

Good luck with everything and I hope the website helps.

Answer 2

my moms cousins little boy was born with a pretty severe one but with the surgeries to fix it you can hardly tell he is now i think 3 or 4 years old give or take do not talk to them much or see them as they live in ohio and i live in texas. i wish you the best of luck and you will love that baby no matter what the moment it arrives

Answer 3

My daughter was born exactly a year after my 4year old niece died of cystic fibrosis. My niece(the only child in the family) was a daughter to me because we lived together and she thought I was her mother(called me MA and walked her first steps to me) because we did everything together before I went to school and after. We went thru 4 years of suffering, she spent most of her life in the hospital- months at a time, come home for a few weeks and then back again. Was holding her when she died. When Laurie was born,she was breach and they had to cut a big hole in me (not a c-section) to unfold her limbs because she was butt first, legs and arms last and all I kept saying was 'breathe baby' because she was quiet. Was soooo happy when she cried and they were fussing all over her and the nurse came over and 'prepared' me that something was wrong with her mouth and not to get upset and to always love her and I told her I didnt care if she had 3 eyes, as long as she was healthy! Laurie looked like a rabbit and I was so happy! She had surgery when she was 3 months old but they sent us to parent groups also with others like her and we didnt see what the big fuss was about! The hardest part was watching her get wheeled away for surgery-had to hold myself back!!Shes 20 now and fine! Atleast it just the lip and not the roof of the mouth too.

Answer 4

I have a 3 year old that was born with a unilateral cleft lip and palate..It's overwhelming at 1st...Gets SO much better!!  www.cleftline.org my daughters story is under story of the month under Ella Yvonne and another one under "what a difference a year can make"...If you go to www.carepages.com her carepage name is EllaYvonne and there is a phot gallery of where we started and where we've come..Hmm is there a way to prepare yourself..That's tough..I had NO idea she would be born with a cleft at all..It's a rollarcoaster of emotions..Ups and downs..I can't really explain it..Hormones don't help either!  Look at pictures..Talk to parents..Feeding is the most important..If one feeder doesn't quite suit you, there are options..I talk A LOT about my emotions in those stories..A terrific source is www.cleftadvocate.org ..(if you do join the message board, turn your mail forwarding off..you can read it on the website..You'll get everyones posts and responses!)  If you need to talk, want more pictures, whatever, feel free to email me at [e-mail] ...Congrats on your soon to be new one!  Trust me, you're gonna miss that little notch when he's all "fixed" up...Take A LOT of pictures 'cause they change in the blink of an eye..Also, if you want, I have a little video of her changes..Makes me cry so be warned lol...I have the link at home (working in the ER right now)..Just drop a line if I can help!!

Answer 5

We found out at 22 weeks that our son had a bilateral cleft lip, which meant he most likely had a bilateral palate as well.  So we were literally freaking about about the prospect of this and the abnormalities etc.  We did a ton of research on the web and in books, but everything came to a screeching halt when my wife almost died at 27 weeks and our son was born at 1lb 11oz.  At that point the cleft seem so trivial.  I am not saying this to take away from your concern, because trust me it is a huge worry.

You will hear a few things:

1. Oh don't worry it's correctable!  My reply, I'm glad  you're ok with my child going through major surgery.

2. They only have to sew the lip up!  My reply, They have to cut the tissue, connect the muscle tissue, then the lip and make it look good.

How do you prepare?  I would look around the web for some pictures.  See befores and afters.  When my son had his surgery I missed his old face, you get attached to your kids no matter what.

Be prepared for comments and brush them off to ignorance. Example a mom was in Wal-mart and had a cleft baby another woman with an older child looked at the baby said, "That's why we don't do drugs".  I would simply reply, "While you're at it make sure you stay in school so you're not ignorant like your mom" (Stay away from wal-mart I hear lots of bad stories coming out of there with cleft babies).

You'll be conscious of what your baby looks like, but after a while you won't care.  But depending on where you are will depend on how quickly you go into surgery to have it repaired.  We had to wait till our son was 6 months because he was a preemie you probably won't have to wait as long.

Also be prepared for special bottles if they happen to have a cleft palate as well.

Good luck, God bless

Answer 6

The questions you are asking are so familiar!  My son (now 17 months) was born with a unilateral cleft lip.  Like you, I did a lot of research, and looked at plenty of photos.  That was a great way to prepare, you have done the right thing.

What is it like when the baby is born? - Well, I was worried beforehand too, but when he was born, well, he was just PERFECT.  The cleft was no issue to me whatsoever, I just wanted to show off my beautiful wee man to the world.  And all of this came as a complete shock to me - I thought I was going to be worried about what others thought, but it really wasn't an issue at all.

How to prepare? - I think you have already done that.  Just make sure you have options for feeding in case breastfeeding isn't working (it did for me).

Emotions you have to face? - Overwhelming love for your perfect bundle of joy.  I found that once I had bonded properly with my wee man, I became really worried and scared about the surgery.  It was just so hard to think that he'd have to go through it, and have a general anaesthetic.  We wished we could leave him just how he was - but of course, you can't for their sake.  It really did loom over us until it was over.  And yes, it was so hard to hand him over to the surgeons, but looking back - we coped, it is done, and our son looks amazing (most people don't even know he has a cleft).

If you want any further info, or want to see some before/during/afer photos, please let me know, I am happy to help.