Cleft Lip

LeeAnn - posted on 06/21/2009

I was lucky not to have either with either of my pregnancies.....I just gained waaaay too much weight the first time, and swelled up like a blimp, lol. With my second, I didn't gain too much, just what I needed to. My father in law is diabetic, and he takes insulin. He has for quite a while now....I hope that everything is ok, and that you don't get too tired of all those shots......Good Luck, and God Bless you and your baby!

Ky - posted on 06/21/2009

ty..things are ok for the most part i guess haha...they diagnosed high bp & gestational diabetes 2 weeks ago...take insulin 4 times a day....NEVER had either in my life..doc is going to look next week at things and see if maybe hed be better off coming early...we shall see..just a waiting game now...thanks for the reply.. :)

LeeAnn - posted on 06/21/2009

I hope that everything is going well with your pregnancy, and that the surgery goes well for him. I don't have a support group yet, I don't think that there is one locally. I think that there is one in our state capital, but we live quite a ways away from there, so we haven't looked into this.

Ky - posted on 06/21/2009

our little boy is due in a few weeks..he has cleft lip & palate..we hae had echo of heart etc and hes otherwise healthy and growing like crazy..we met with ENT surgeon last week and their plan is lip surgery @ 3 months...first palate surgery @ 9 months..we havent any experience with this so kind of nervous..we have a bit of support but we just moved to TX 2 months ago from hawaii ( army) so kinda stinks having no friends or family close by

LeeAnn - posted on 06/20/2009

I don't have a child with a cleft lip or palate, but my daughter has Velocardiofacial Syndrome, and was spared having this symptom. I was just wondering if your girl might have the same disorder. It is Chromosone 22 Q-11.2 deletion syndrome. My daughter is newly diagnosed, and I would like to find other moms with children with the same disorder. I hope that your daughter's surgery goes well. Good Luck

D'Anna - posted on 01/26/2009

Hi, Lorissa.

My 9 yr old daughter was born with Goldenhar Syndrome which included a severe cleft lip and palate among other craniofacial defects.  Her lip adhesion (bringing the two sides together) was done when she was just over a month old due to some other issues.  She had a second surgery to revise the first surgery at about 8 months old.  We expect several more surgeries in the future due to her syndrome as well as more for her palate.  Feel free to contact me if you have any questions or concerns. 

Marie - posted on 01/23/2009

Oh!  I also wanted to mention that there is a group here called Moms of kids with Clefts.  Come join us if you haven't already!

Marie - posted on 01/23/2009

My son Drew was born with a severe completel bilateral cleft lip and palate.  He has a chromosome deletion causing Velo-cardio-facial Syndrome.  This has caused him to be very small in stature as well as the cleft and a heart defect.  It also caused a platelet dyfunction and some other small random things.  He has a spinal defect that may or may not be part of his syndrome (they are still researching it).  He also has von Willebrand's Disease which is a bleeding disorder unrelated to his syndrome.  He is 7 yo, 8 in March.  He has had 14 surgies/procedures under anesthesia.  He has at least 3 more surgeries, possible 5 or 6.  It is sad when 1/2 the staff at Same Day Surgery know who you are!  LOL!  It sounds like with your daughter's cleft, however, that it should be only one or two surgeries!   That is awesome!  I look forward to getting to know you.

Jessica - posted on 01/23/2009

Hello my daughter was born with a cleft lip and primary palate (gumline).  She is 7 months old now and has had one surgery so far.  I know how overwelmed you are if you need anything just let me know.  I can help.  My daughter had her surgery when she was 3 months old.  Are you having any feeding issues?

Laura - posted on 01/19/2009

Hello,

My son James who now is 13 was born with a serve cleft lip and palate, and it has been a long road, but we have survived.  He has went through about 7 or 8 surgeries for his repariment, and we are not even close to being done.  They say the surgeries don't stop and until there are about 18.  He has speech theapy once a week at school, and he gets very frustrated when we can't understand what he is saying and he has to keep repeating it.  I hope everything goes well for you, and if you need an hear, I will listen and if you have questions I will try and answer.  Thanks

Samantha - posted on 01/19/2009

hey,

well he waz about 6 months and oh my god it waz the hardest thing in my life i had to go though and to see him in pain.......i reallly hated it but it needed to be done.....oh and also when he waz done with it he had his arms wrapped up and they gave me a speical bottle that he need to feed with.....he couldn't eat very well after and before he had it done....but i had people there to help me and him get though it.....i have some pics of him before and after he got it done.....so if u want to check them out i could maybe send u some or u can add me to facebook if u like....well i don't have the pics of him before on there yet but im going to get them on there very soon......anyways my name is samantha dawn.....talk to u later...

Lorissa - posted on 01/19/2009

Quoting Samantha:

hey there well my son Tyler waz also born with a cleft lip but he also had a cleft pallet as well....i know what ur going though....he is about 2years old now and he has had about two surgery's on his lip and right now he is going though speech therapy....its very hard for me and him....well im a young single mother....if u want to chat more about i can try to help u out if u need to ask any question about it.....ill try my best to anwser them for ya.....anyways hope everything goes good.....bye for now...

samantha,

Thank you so much for replying. It is so nice to hear from someone who has had a child to go through the same thing. Can you tell me how old your son was when his first surgery was? They say they are going to do my daughters first one at about 6 months...she is three months now.

Samantha - posted on 01/19/2009

hey there well my son Tyler waz also born with a cleft lip but he also had a cleft pallet as well....i know what ur going though....he is about 2years old now and he has had about two surgery's on his lip and right now he is going though speech therapy....its very hard for me and him....well im a young single mother....if u want to chat more about i can try to help u out if u need to ask any question about it.....ill try my best to anwser them for ya.....anyways hope everything goes good.....bye for now...