Mommies of cleft-affected children - Page 2

[flaca1]

Bone Graph Surgery

Hello Houdini!

Welcome! I read your thread asking about the bone graph surgery. First off I have to say that I am surprised that both of your children have a cleft lip- I thought it rarely happens and the chances of both of your children having it was very minimal. Interesting...

I dont know if you read my thread before yours (it was very long i know =) but I had the bone graph surgery when i was about 12. I had bone graph taken from my hip and they put in in my upper right jaw area I had missing.

From what I remember the surgery wasn't that bad. I do remember having 3 months of therapy cause I was having trouble walking after that. Also, I couldnt really eat a whole lot after until my jaw healed-which was very quick by the way. That didnt hurt at all. The scar on my hip is kinda big but then again this was more than 10 years ago so I can imagine the scars for that type of surgery are minimal these days.

I do believe this surgery is worth it because my smile is SOOO much better than it was when I was 12. The healing process of the jaw was quick , although not as quick for the hip. But in the long run this was definitely worth it.

Let me know if you have anymore questions. Feel free to ask..

Flaca1

[EXOLAX]

Originally Posted by annakiss

Women who drink and smoke throughout their pregnancies have babies who are fine. I drank and smoked before I knew I was pregnant (because I wasn't planning a pregnancy) and I feel like I'm forever going to be paying for that. Or worse yet, my son is paying for it. And I keep trying to tell others and I suppose to tell myself, that that didn't necessarily cause the defect, and I know that that's true. I understand that not having a daily doseage of folic acid in my diet didn't cause the defect, but I also know that it could have helped to prevent it.

Annakiss,
I am responding to an old post here so bear with me if this all old hat by now. First off I know first hand all of the feelings you have expressed here. I would like to point out that there is no link between folic acid and clefting, for that matter there is ONLY a link between folic acid and neural tube defects (such as spina bifida) and none to any other kind of deformity.

Our eldest was born with a cleft lip and aveolar ridge (gum line) as well as congenital neurologic strabismus and environmental allergies. She's almost 5 and has had 4 surgeries (all before she was 2). I have dealt with feelings of guilt since she was born. We didn't see her cleft, even though is was a surprise to us, but saw it on the faces of people when they first saw her which is how we first came to really recognise it. I remember being in the geneticists office and asking her why this happened, and how we can prevent it from happening again. Her response was to take good care of myself during pegnancy. Now, I believe I could not have taken better care of myself while pg (took prenates, no medications, no alcohol, no caffeine, no nicotene etc.. I ate organic, I tracked my daily intake of vegetables and fruits (varrying colors and above and below ground) and made sure every day that I had atleast 100 grams of protein before dinner. I lost it with the geneticist and mused over all those women who have 'healthy' babies who eat fast food, drink coffee and alcohol, smoke cigarettes or even worse. The geneticist offered up that 1) sometimes things just happen in nature and 2) All those things I did will help our DD developmentally in so many ways. It didn't offer me much comfort at that time.

I did have a mom from my DD's class ask if I took prenatal vitamins during my pregnancy and I was floored. First because of the misnomer over th elink between clefting and folic acid and secondly because she was blatantly accusing me of not doing enough and in effect causing this to happen to my child. Ignorance is everywhere. It made me realise that I still am not over my guilt issues in spite of having another child after her who is not cleft affected (and during her pregnancy I had such severe all day morning sickness I could barely eat at all, let alone track what I was eating daily).

Annakiss, do you go to a craniofacial clinic? We are geering up for our DD's next appt.. We will find out then if her PS believes another revision would benefit her. We are trying not to think about it because we don't know what he will determine but we are already pretty steadfast against it. We think she is beautiful and can't imagine telling her that she has to go through a painful surgery and recovery to repair something that we don't think needs changed. I have spoken with adults with clefts though and each and every one says to do whatever we can as young as possible inspite of our parental concerns.

She has issues with her teeth as well and the ortho's don't know what is going on. She has a tooth where one should not be and no one knows yet if it is an ectra tooth or a permanent one that came down too early in the gap left by the cleft in her AR. The waiting game is frustrating but it seems we all live in a 'wait and see' world. Clefting is so variable that no one can tell in any individual case what is going to happen.

I saw that you gave your name to the nurses for other parents and I hope you did receive some calls. We started a support group through our craniofacial center for that exact purpose and it was wonderful. I'd take my daughter and a cleft bear from Gund to the clinic and meet with new families. It was helpful for them and me as well. I think it's also good for DD to see other CA children so she doesn't feel so isolated.

How have other people handled clefts and revisions as your children grew? I'd love to hear some recent experiences with older children.

[the_queen]

My 4 yr old DD was born with bilateril cleft lip and gum. Her palate was unaffected, and we managed to breastfeed for 14 weeks until her first surgery. The next two weeks were expressing-hell for me (I was 22 yrs old, marriage was rocky to begin with, as-yet-undiagnosed PND) and at 17 weeks she was exclusively on formula At 11 months she had another surgery because somehow her gum had been put in UPSIDE DOWN and her top teeth started growing out through her NOSTRILS and then the anaesthetist OD'd her on morpheine as the operation was finishing So basically I wasn't too happy about that surgery.... But all ended up ok, and she has been pretty much problem-free since then.
She has just had her third surgery (age 4.5 yrs). It was basically "cosmetic" (they offered it to us, to "tidy up" the bigger scar and also the flared right nostril) but also she had a couple of tiny fistula's in her nostril floor which tended to leak any fluid or soft food. I didn't want that for her when she starts school (August this year).

I thought that surgery would be easier for her as an older child - I was SO wrong. She wouldn't let us clean her wound, she wouldn't take her paracetomol (which was fine by me, I don't ever give her medicine unless she's extremely ill - but the nurses were having conniptions LOL "she has to take it!!!!" I'm like, "why? If she doesn't take it, she'll be in pain a little, but then perhaps she will take it then! I'm not forcing it down her throat!!!") And she wouldn't let them take her stitches out. So they had to anaesthetise her again, which she fought, screaming and kicking (meanwhile I'm trying desperately not to burst into tears and run out of the theatre). And she hasn't let me clean it since the stitches have been out (I've had to teach her how to clean it herself, and apply the chloramphenicol).

She now says she is NOT having the bone graft (due when she's 8 or 9) because "I might wake up before they've finished and it will hurt me" so now I'm stressing out that perhaps she was aware or awake during this recent surgery?!!

Good to have a bit of a "cleft kids support group" on MDC I'm an Aussie, so our surgery schedules etc are probably different to y'alls.

[PuppyFluffer]

Any of you experienced folks want to offer some advice here:
http://www.mothering.com/discussions...d.php?t=419736