Hi!

Tam - posted on 12/02/2012

My son is 14 and i have been avoiding bone graph surgery but have now scheduled it for this summer. I am extremely petrified! Any help would be appreciated.

Church - posted on 03/04/2012

Hi im from philippines. My son Church was born with a bilteral complete cleft lip and palate. He will turn 6 months and will have his surgery at 7mos. Weve learned his condition when i was 5 mos pregnant and from then on i never stopped researching about cleft babies. What ive learned from this journey is that we should not underestimate cleft babies. They can breastfeed and do things a normal baby can do. Being a first time mom with a first cleft baby in the family was difficult with nobody to tell me how to take care of my baby. They told me i cant breastfeed my baby, but i was able to, though only from a short time coz i thought it would be difficult for him to breastfeed. Now at 6 months i realized they can latch, we just have to be patient.

Vicky - posted on 03/25/2009

Hi im Vicky, my daughter was born with her full cleft missing, she had her first opertion when she was 9 months old & is now a 20 yr old woman, i also have 2 sons but niether had their palate missing & we couldnt trace it back any where in our family...

Im from England..

Elaine - posted on 03/24/2009

Our son Max had a cleft of soft and hard palate. He also could not extend his tongue and his jaw was recessed. He was given the diagnosis of Pierre Robyn Syndrome. Cleft was repaired when he was 1 year old. Working hard at the moment on speech, he does not make any constanant sounds. He is now a healthy 2 1/2 year old.

Take care, special mum.

Haven - posted on 03/24/2009

Quoting Marie:

Hi, Rebecca!
I am in Utah. My oldest, Drew was born with a bilateral cleft lip and palate also. He has had 14 surgeries, though not all on his cleft. Welcome to the group!

Wow, 14 is a big number! What else did he has sx for? Is that Drew in the pic? (the big brother) He looks great, can't even see any scar. My daughter Madi was born with the same, Bilateral CLP. She has had the first 2 sx's, and is going in for tubes for the 2nd time next month. She's great with hospitals so far. She's been in many times, she's had RSV,and pnumonia 4 times. Does Drew get sick that easy alot too? I've noticed that Madi doesn't just get a cold.                                            Do they have support groups where you live, like "About Face". They try to have picnics every year in Vancouver. We've been to one, there's one coming up this May too.                                            How is Drew's speech? Did he have a hard time learning to talk. Madi only has about 5 words? She can sign around 30. She would know more if I had an easier time learning them. She even makes up her own sometimes!

Sorry for all the questions, I'm always interested in other peoples stories, and it also helps with Madi. =)      

Marsha - posted on 03/21/2009

Quoting Haven:

My daughter Madi was born with a bilateral cleft lip and palate. She is now 23 months. She had her first surgery at five months, and had to waer the nose stints and plate in her mouth for those first five months. It was hard for her cause every time she bumped her nose it hurt. After her lip surgery she still needed to wear her mouth plate until her palate surgery at 10 months. She still has a small hole at the front of her mouth. We have difficulties talking, but I am learning to sign so I can teach her. She has about 15 signs that she uses regularly. I'm worried about all the surgeries that she will need in the future. I heard the bone graph is a very painful surgery. I know a woman who had it done than decided she didn't want any more surgeries after that. I'm going to see if it's possible that they take the piece of bome from my hip to help ease some of the pain from Madi. I don't know if that has ever been done, but hopefully they will allow it. We live north of Vancouver in a small town Squamish. We moved here when Madi was 5 months old, I kind of wish we stayed in Vancouver beacuse the cleft team is there and there is a larger network of parents with cleft babies. Madi is the only kid in Squamish with a cleft palate.

HI - Read your comment about bone grafts...I am 54 yo and was born with a unilateral cleft lip and palate. My doctor was Dr. Richard Walden, who founded the Hagedorn Cleft Palate and Craniofacial Center on Long Island. As I recall my surgeries were 'cutting edge' at the time and were used to teach future plastic surgeons on procedures. One of my surgeries was a bone graft from the hip for my left nostril. While it was surgery and I am sure that I was sore, it was not life altering for me. I have no trouble with my hip and forget about the surgery, unless reading a post like yours. Since this was a while back, I do have a scar about six inches long on my left hip - I am sure they use staples or surgical adhesive today to minimize the scarring - and we did not have the scar preventive creams that are available today.  I encourage you to speak further with your medical team about the bone graft surgery. I will say that from a child's perspective the greatest influence on my outcome and state of mind were my parents and their treating my medical care as 'routine' ( from my perspective). I enjoyed my doctor visits -- okay the ice cream afterwards was a help:)  - and never was frightened of the hospital. The only part I recall not looking forward to was the shots, those were mostly to prevent infection after surgery. Today these are administered by IV instead of individual needles every 4 hours. Though each situaution is unique, I would be more than happy to answer any questions or concerns. Good luck to you and Madi!

Haven - posted on 01/18/2009

I've been soooo bad at doing the lip massage! She's 2 now and I've probably only done it a handfull of times. It's just that she's so sensative about her nose and mouth. She had a bilateral CLP and had to were the metal splints for about 8 months. Every time she bumped her nose it hurt her. She also went to the orthodontist once a week for 5 months then only once a month for 5 more. I think she remembers having her mouth poked and proded to get photos, never mind when I had to change her tape and clean her plate/splints every night!-she HATED that! Since her lip repair I do put on Vitamin E Oil, she just wont sit for me to massage it. At least i try once in a while.! She also has had 2 revisions done on her scars. One side she rubbed a couple of sutures when she first had the sx, so they went back at her 2nd sx and re-sutured the spot, only to have her rub them out again! On the other side it had a serious infection from the first sx, so the scar was quite wide. They have shot in some cortizone and will cut it open again and re-suture at a later date. I just found out that her ears have filled back up with fluid and has some hearing loss associated, so they are putting tubes in again. Her tubes from her palate sx just came out a couple of weeks ago, they were only supposed to be in for about 6 months!

It just seems to never stop, and she has a lifetime left to deal with this, or at least till she stops growing? I feel so bad for her, but I'm taking it far worse than she is. Madi is such a happy little girl!

Rachael - posted on 12/15/2008

Emily- That's interesting about the nose splints. Our doctor didn't explain it to us like that. Hannah only had a partial unilateral cleft but still has to wear them. Our surgeon did however break her nose because he said she had a severe deviated septum (sp?) and this would correct it and hopefully she would never have to have another surgery for it again. He explained it to us like this: After you have braces you have to wear a retainer to keep your teeth from returning back to the way it was before. The nose splints are like a retainer for the nose. I thought it was a good way of thinking about it.



The massaging isn't so terrible and it is easy to do. I'm interested to see how long they tell you to do it each day. Hannah is tolerating it much better now. Sometimes she doesn't even cry with it. Good luck!

Emily - posted on 12/14/2008

Hi!
Marie, his repair looks AMAZING and it turned out that he didn't need the nostril splints which was a relief - apparently they only use them for unilateral clefts or clefting that goes into the nose - b/c Ari's cleft was symmetrical and only partial, they didn't need to use them. We only have 2 more days of keeping his hands out of his mouth... yay!
Rachael, we will start doing the massage this week - we go back to the hospital on Thursday to learn how to do it... can't wait (not really)! I'm sure my son will love it about as much as your daughter does. Our surgeon explained that the nostril splints are to keep the nose as symmetrical as possible which improves the cosmetic results because the eye isn't drawn to symmetry the way it is to asymmetry. I'm sure they're no fun!

Rachael - posted on 12/13/2008

Hello Everyone! I have been reading everyone's comments on here. This is great. I have a 5 month old little girl, Hannah, who had a partial unilateral cleft. She had surgery 1 month ago and it went great. I am so glad it is over.



Now I am battling with her wearing nose splints. The surgeon said she needs to wear them for 3 months. I hate these things!! Has anyone else had to wear these an 4 how long did you do it?



Also we are doing a massage technique on the scar. Anyone do this? Hannah hates it but it only lasts for a short time so she bears it.



We live in Kansas City and thats where she had the surgery. Great team.

Marie - posted on 12/02/2008

Emily,
I am so glad to hear everything went well! He looks great! It is always amazing to me how fast they recover and how slow we moms recover! It is so exciting to see these cute kids as they have surgery, etc. His nostrils look great. Did they even have you use the nostril splints?

Emily - posted on 11/28/2008

Hello everyone!
Ari's surgery went very well - the cleft team was amazing.
He's sleeping off his codeine/morphine hangover right now.
His first post surgical pics are posted at
http://gallery.me.com/j.parnell#100001&v...
Emily

Amy - posted on 11/24/2008

thanks for the welcome....and YES Savannah is quite a lil munchkin and such a happy, delightful lil baby.

Emily - posted on 11/24/2008

Thanks for the info on the nostril splints Marie - I'll keep an eye on them - hopefully he'll only have to wear them for the first week since the clefting doesn't go into his nose.
Surgery on Wed. - I'll keep you posted.
Welcome Amy - Savannah looks like a very happy munchkin!

Marie - posted on 11/24/2008

Welcome Amy! :)

Amy - posted on 11/22/2008

Hi everyone...My little girl Savannah was born with a complete bilateral cleft lip and Palate. We live in Mount Forest, Ontario which is about 3 hours from London, Ontario which is where we go for surgery and to visit our cleft team. She has had 2 surgeries, her first when she was 8 weeks old to implant the latham device (its a device they used to close the gap in her lip) that lasted about 7 weeks before they did surgery to remove it and do a lip adhesion. She is going to be going for her third surgery in January to close her palate.

There was no history on either side of our families with clefting so this came as a complete shock. We found out about her cleft when we had an ultrasound at 19 weeks. That made for a very long pregnancy having to deal with driving to London once a month for check-ups and ultrasounds once a month.

I am so glad to have a very supportive partner and family to help us through this but in the end Savannah is just an amazing little girl who I couldn't possibly live without.

Marie - posted on 11/17/2008

Oh, and Emily, you have two cute "boys"! Loved the picture!!

Marie - posted on 11/17/2008

OK- I am back! Sorry I disappeared for the weekend! I didn't have time to carefullyread all the replys after mine (I just skimmed through), so sorry for repeats.



Nose splints- Drew had them after his lip repair. BE CAREFUL! Drew pulled his out and tried to eat them (my husband was home with him and I was at work). We had been taping them in and, lucky for us, the tape stuck onto his palate prosthetic. My husband panicked and called his mom who just increased his panic. Luckily, they called me at work and I ran home and successfully retrieved them (with my mother-in-law screaming at me that I was going to dislodge them and cause him to choke on them, couldn't we just go to the ER the whole time...). So, be careful. We didn't use them as much as we should have and I think it contributed to his nostrils being flat. He has a VERY tight repair, so that obviously is the biggest factor.



Kael and the submucosal cleft-

We haven't seen the cleft team yet because no one thinks he has a cleft. My 7 yo, Drew has a cleft. That is probably the only reason I thought of it. Our pediatrician looked and said he saw Kael's uvula, but because he chokes at almost every feeding, sometimes causing him to stop breathing, we are going in for a swallow eval. I don't know if that would reveal a submucosal cleft or not, but hopefully we can figure out the choking issue in any case.



Okay, I think that was all I had to add.... I hope so anyway. Welcome at all you new members! :)

Haven - posted on 11/15/2008

My daughter Madi was born with a bilateral cleft lip and palate. She is now 23 months. She had her first surgery at five months, and had to waer the nose stints and plate in her mouth for those first five months. It was hard for her cause every time she bumped her nose it hurt. After her lip surgery she still needed to wear her mouth plate until her palate surgery at 10 months. She still has a small hole at the front of her mouth. We have difficulties talking, but I am learning to sign so I can teach her. She has about 15 signs that she uses regularly. I'm worried about all the surgeries that she will need in the future. I heard the bone graph is a very painful surgery. I know a woman who had it done than decided she didn't want any more surgeries after that. I'm going to see if it's possible that they take the piece of bome from my hip to help ease some of the pain from Madi. I don't know if that has ever been done, but hopefully they will allow it. We live north of Vancouver in a small town Squamish. We moved here when Madi was 5 months old, I kind of wish we stayed in Vancouver beacuse the cleft team is there and there is a larger network of parents with cleft babies. Madi is the only kid in Squamish with a cleft palate.

Rebecca - posted on 11/14/2008

Melissa, they told us he was "probably a boy" so we didnt rush out to buy all blue things! But i had to have an amniocentesis as they thought there was a chromosomal disorder related to the cleft. There wasnt, but we found out he was definately a boy! That, or a CV, is the only way for sure to tell the sex.

Melanie - posted on 11/12/2008

Hi everyone,I am Melanie from Malaysia and my youngest daughter Samantha was born with a unilat cleft which was repaired locally when she was 4 mths.She is now 4.
Good to find this website...hope to meet more Asian moms.

Laurie - posted on 11/12/2008

Hi! My son Clark is 19 months old. He was born with a unilateral cleft lip/palate. We're from Baltimore, Maryland in the USA

Melissa - posted on 11/12/2008

That's good that you have family that you can stay with in TO. I'm sure it will help to have the extra support around right after he has his surgery.

We're lucky that we have such a good children's hospital less than half an hour away from our house, and that both of our little guy's grandma's are close by to us too. We have lots of help around if we want or need it.

It is amazing what they can "tell" in an ultrasound. We know so many people that were told the wrong sex of thier baby when they went in and the ultrasound tech was "positive" of the sex.

Emily - posted on 11/12/2008

We do have to travel for surgery - to Sick Kids in Toronto. Ari will stay in the hospital for one or two nights and then we stay down with family for a week so that they can take the sutures out and so we're not too far away if there are problems. Coincidentally, the surgeon who will do Ari's surgery was the last doctor to do a fellowship with the surgeon who did all of my husband's surgeries!

Vida - posted on 11/12/2008

G'Day to you! ;) Welome, it's nice to "meet" you. Your little guy is a cutie. :) I live near Pittsburgh, PA.

My mom lived in Melbourne for about 5-7 years, I'd love to someday visit Australia.

Rebecca - posted on 11/12/2008

Hi Melissa and Sam,
Mel, some doctors screw everything up! They couldnt tell us if he had a cleft palate as well as the lip, and they said he had 2 kidneys when he only had one, which is quite large to make up for the missing one! MMM. The surgery isnt a nice thing to watch your child go through. They are dosed up on morphine for the first couple of days so they can sleep through it, which is good. And by the time they go home they should only need the codeine and panadol when necessary. Its a very nerve racking time, though they come through it better than the parents! And they dont remember it, being so young. We dont know how many operations Jett will need. Hes had 2 so far.

Sam, hi! Im from Sydney. I am also a member of cleftpals, though because we moved i will have to get back in contact with them. Is Dylan using Pigeon bottles? He is such a cute guy!

Sam - posted on 11/12/2008

Hi, my son Dylan was born with a cleft palate. I am on the central coast, Australia. I am a member of cleftpals, which is a great support group that can answer any queries. They also supplied the squeeze bottles my son needed as he cant suck. Dylan is now 4 months and is awaiting surgery, when he is around 10 months. I am so nervous, but i know its something that needs fixing.

Melissa - posted on 11/11/2008

Yea, it would have been hard to pick up even if they were looking for it. He had his arms covering his face when we went. lol. And they also told us HE was going to be a SHE. So we had 2 big surprises when he finally made his appearance into the world. Keifer is 10 weeks old.

I'm really nervous about the surgery even after meeting with our plastic surgeon. My husband doesn't seem to be nervous in the slightest, where as i feel like i'm going to have an emotional break down. Though a couple we know went through it with thier daughter, and talking to the mom made me feel a lot better. It made me feel like i wasn't going as crazy as i though i was, and that its normal for a mom to be scared and slightly emotional when it comes to handing over thier baby to someone else when you know they're going to be coming back in pain. She kind of prepared me for what was going to happen.



As far as we know he's goin to need 2 surgeries for sure. The one in December and one before he starts school. Our surgeon told us anything after that is hard to tell now. Same with any potential dental surgery he may need.

Rebecca - posted on 11/11/2008

Hi Melissa, im from Australia. Welcome to the group! An incomplete uni cleft would have been hard to pick up unless he was facing the front in the ultrasound. They never do what you want them to do! We never got a good profile view of Jett, so we didnt know he had the cleft palate til birth. Good luck with the surgery, we know what you're going through! How old is your son?
Emily, i thought Jett would have to have nose stents in but it was never mentioned. I guess it depends if they think they need them or not. And every hospital is different. The arm splints are worse at night, because Jett sleeps on his tummy he would roll over and get stuck, and he'd wake every hour. During the day we left them off most of the time, when we could watch him of course. The second op was harder in that respect cos he was crawling and could feed himself with the bottle so thats why we left them off. The first one, he was just rolling over so we didnt take them off much, just the required amount of time.

Melissa - posted on 11/11/2008

Hi Emily,



It is nice to meet a fellow canuck! My mom's actually from Sudbury!



They do the surguries at the Children's Hospital at the Health Sciences Center in Winnipeg. Will you have to travel to get Ari's done?



Keifer will have the nose stents as well as the arm splint. I'm not looking forward to that either.

Emily - posted on 11/11/2008

Hi Melissa - nice to meet a fellow Canuck! Where do they do the surgeries in Manitoba?

Rebecca - Ari's surgery is on the 26th. Our surgeon uses the nostril splints (same as nose stents) on everyone for at least the first week after surgery. Ari also has to wear the arm splints for 3 weeks - I'm NOT looking forward to that, I'm sure he's going to hate them too!

Melissa - posted on 11/11/2008

Hi Everyone.



I'm in Winnipeg(Canada). Our son was born with an incomplete unilateral cleft lip. There wasn't any history of it in either of our families, and they didn't see it in the ultrasound. He goes for his first surgery on the 15th of December.

Rebecca - posted on 11/10/2008

Hi Em! I dont think i asked how old Ari is? Ariel is a gorgeous name. Did u mean nose stents? As in the little rolled mesh tubes they put in their nostrils to keep them open? If so, Jett didnt have those. He had to wear splints on his arms for 2 weeks to stop him touching his mouth. He absolutely HATED them! What date is the surgery?

Emily - posted on 11/10/2008

Hi Rebecca and Marie!
The surgeon told us that 80% of kids with submucosal clefts don't require surgery since they don't have language development problems. They only do surgery at 14mos if there are language (pronunciation) problems. Ari is our first - his full name is Ariel (pronounced R-E-L, Ari is pronounce R-E, Ariel means Lion of God in Hebrew). Have either of you had experience with these nostril splints? I was just reading through our pre-surgical package today!

Rebecca - posted on 11/10/2008

Hi Marie and Emily,

Marie, i have heard of that before. A friend who lives in New Zealand has had 2 kids with clefts and she had them tested for it. They tested negative. When are you going back to see the Team? It would be interesting to find out. Are you planning to have any more kids?
Emily, why wouldnt they repair it? I dont actually know alot about that kind of cleft. The photos are great! Your husband doesnt look like he ever had anything wrong! And Ari is such a cutie. Is he your first? Nice name too, is it pronounced "Ar-ree" or "Ar-eye"?

Emily - posted on 11/10/2008

Okay - that's not working... you can see the photo at
http://gallery.me.com/j.parnell#100001/I...

Emily - posted on 11/10/2008

Oh yeah... they suspect Ari has a submucosal cleft as well but it may not require surgery. I keep trying to post a photo of my husband with Ari but to no avail - I just thought it might be helpful to see an adult with clefting for comparison. I'll keep trying!

Marie - posted on 11/10/2008

Drew is 7 yo. We didn't have a history of clefts on either side. Drew has chromosome 22q11.2 Deletion- meaning he is missing part of his 22nd chromosome. It appears to have been spontaneous as neither my husband nor I have any symptoms. I a, wondering (and Emily and I have talked about) whether or not my 8 week old has a submucosal cleft palate. It will be interesting if he does to see what the cleft team and genetics team think about it.

Rebecca - posted on 11/09/2008

Hi, nice to meet you both. Im in Australia, its hard to find any support groups here. Marie, how old is Drew now? Is there a history of clefts in your family? Emily, what a cute little guy! Good luck with his sugery, its not an easy thing to go through, but the end result is worth it. And being so young, they dont remember it, thank God!

Emily - posted on 11/08/2008

Hi Rebecca;
We're in Sudbury (Canada, about 4 hours north of Toronto). My little guy, Ari has a partial bilateral cleft lip - my husband had exactly what Jett had when he was born. We're due for our first (and hopefully only!) surgery at the end of November. Nice to "meet" you!

Marie - posted on 11/08/2008

Hi, Rebecca!
I am in Utah. My oldest, Drew was born with a bilateral cleft lip and palate also. He has had 14 surgeries, though not all on his cleft. Welcome to the group!