Cleft lip

[gabbysmom04]

Just wondering if anyone has a child with a cleft lip and or palate. My DS 7weeks was born with a bilateral cleft palate and lip. I'm looking for anyone else who can share their story. Also any help for taking DS to WDW he will be 3 months at our trip.

 

[3littleHalls]

Sorry, I am not any help regarding the cleft palate. I babysit for a speech therapist(First Steps) and the way they can be repaired these days is amazing. When I have taken little ones to WDW, we used the baby Bjorn and stroller a lot. We rode the rides we could and had a great time. Best wishes for a magical trip!

 

[cindy21494]

Our daughter was born in 2000 with a cleft palate. She had problems with taking a bottle (even the special nipples) so we ended up putting a tube into her belly. Ironically one week after the tube was placed, she started taking her formula by bottle. Her palate was fixed at 11 months and luckily they were able to close it completely. She also has minor hearing loss (which can sometimes happen with cleft palates) so she wears hearing aids and needs speech therapy twice a week. If there is anything specific you would like to know about our experiences, let me know. I would be more than happy to answer your questions.

I hope you have a great trip (can't really give advice on that, we waited until our DD was 14 months).

Cindy

 

[gabbysmom04]

Cindy, Your girls are beautiful! Our son was a day away from having a tube in his belly but we are waiting a week or two to try and make him gain weight. We finally found a nipple that works for him. He also has severe reflux which does not help. Thanks for writing! By the way where did your DD have her surgery?

 

[belle&beast]

I am a speech pathologist and have worked with kids of various ages at different points of their repairs. I would reccomend a children's hospital- one with a good cleft team - here in Indiana it would be Riley Children's Hospital but in New York, you probably have plenty of options. You could look online to find some info from Riley. When I was in school 10 years ago the director of the team had a repaired cleft himself and was very insightful. Unfortunately I can't think of his name right now! I am also a mom of a reflux baby and boy do I feel for you!!! You probably have feeding issues related to the cleft and then the reflux! We used reglan and zantac for my son and the reflux resolved at about 8 months when he began moving. If I come across any good literature for you I will let you know. Just know that feeding will get easier and I hope you have a good early intervention speech pathologist and occupational therapist to assist you.

 

[cindy21494]

Thank you, I saw the picture you posted of your little boy and he is such a cutie .

I wish we had waited to put the tube in. We really had no one to talk to other than the doctors and our family. Our DD had her surgery at Geisinger Children's Hospital in Danville. They were very good with her (and us). They think she has some kind of syndrom but currently there are no tests to determine that. She had a recessed chin (common in cleft palate babies), her eyes were large, an upturned nose, a high forhead, and a flat nasal bridge. As she has grown, most of the features are now in correct proportion to where they should be.

She was born at Berwick Hospital, but she had complications and was rushed to Geisinger. I only got to see her for about 2 minutes before they left (very scary). She was in the hospital for two weeks. We had to learn to put an NG tube in her for feeding since she was only taking about 2 CC's of formula by mouth. That is why we went with the belly tube.

We now go to the hospital to see her Audiologist once a year. She also wears glasses, but that is common on both sides of our family so we don't know if it is related to the syndrom or not. She has been in early intervention for speech and hearing therapies since she was two. They have been wonderful with her.

If you ever need to talk or have any questions, please e-mail or PM me. I know sometimes I wished I could talk to someone who went through what we were going through.

Cindy

 

[gabbysmom04]

Our son dominic is getting treatment at NYU we have to travel to NYC once a week for 6 months. He has a moulding in his mouth that is helping to shape his palate to help with his surgery. Dominic also spent two weeks in the hospial (albany med in NY) He was there because when he was two days old they heard a heart murmur and he was having a stomach problem. He was ruched to their NICU where we found out he had a small hole in his heart and that he needed emergency surgery on his stomach. We found out later that he had ruptured his bowels in utero and had a tummy full of ecoli. He had an infectionfrom the ecoli, the surgery saved his life! They also told us that he had some sort of syndrome. One of the ones they told us about was something that he would not survive. He had genetic testing and it all came back normal. we did spend a week going insane waiting for the test results. I worry about his hearing and speech too. We work with a speech pathologist at NYU she seems to be wonderful.

Belle, your son did not get better until eight months? I might lose my mind before that. I also have a 18 month old DD who is making me pay for bringing home her brother. Did you son ever have an upper GI? We had one and they told us that his reflux is severe. I hope we will still outgrow it! We just stared giving him prevacid I hope it works. Did you have any issues with any problems from the reflux, throat problems etc? I am worried that all the spitting up will cause fluid in his middle ear putting him at a higher risk for hearing lose and speech problems in the future.

 

[3littleHalls]

I had/have 2 reflux kids. Prevacid was the only thing that worked for us(worked great once on the right dose). My DS didn't officially outgrow his until he was 18mos. His did back up into his ears and he eventually ended up with tubes. My DD outgrew hers by a yr old. Each one had different side effects from the reflux my DS was mainly the pain/crying and my DD couln't gain weight. Health wise my dd was worse off, but DH and I lost our minds not sleeping for 9mos with our son. Your DS is a miracle and has been through quite a bit! I wish him good health and the best for his future surgeries.

 

[gabbysmom04]

3littlehalls, I feel for you!! Two kids with reflux and one for 18 months. I feel so bad for my DS he has so much he will has to go through.

 

[luvsmickeymouse]

Both of my sons have a unilateral cleft lip and cleft palate. They are 15 and 18. My oldest is all done with surgery. My youngest needs one or two more, depending on how much they do during his next surgery. They are both doing great. They have been through ALOT! My oldest is in college, he is adopted from Korea! My youngest is in 10th grade, he is adopted from The Phillipines!

 

[sara74]

DH and I are both dentists and while we don't participate in Connecticut's cleft team I know that there is a great one here. I assume that most other regions have teams as well, with oral surgeons, speech therapists, pediatric dentists etc. You will be amazed by the treatment that is available. Resources are fantastic in the States.

If your son's surgery doesn't take place until after your trip be prepared to get a thick skin... Our DD3.5 had a large 'strawberry' on the side of her head (and very little hair) when she was an infant. We got so many comments from strangers and it really got to me at first. Then I started telling everyone that it was the spot on her head where God was telling us to kiss her. That kept them quiet!

Best wishes to your family for easy and successful surgeries, and a wonderful trip!!!

 

[mrsmom]

My dd now 11 was born with a cleft palete and has pierre robin syndrome, she has had alot of surgeries and had and still has gastric reflux, she was in NICU for three months , she had heart surgery ,kidney relux and g-tube and seven sets of ear tubes and is getting her third paletesuhery as soon as the cranialfacial team decides when. It does get alot better with age , She is a very outgoing 11 yr old and has no hearing problems or speech problems (But is on a cpap machine do to sleep apnea because of second palete surgery and has a voice that you wouldn't believe.. If i can help just let know.
Kim

 

[nelle]

My youngest son was born in S.Korea with a bilateral cleft lip and palate. He was still in Korea when they repaired his lip but we could see in his pics that he had some sort of device on to push his palate back(atleast I think that is what it was). When he came home he had a large retainer (we called it a plate)that covered his open palate to help with suction. His bottles after the lip surgery were just regular bottles but the nipples had a slit in them which allowed the formula to come out faster. He just turned a year dec 1 and has been home since the first of june he just had his palate repaired in nov. He has never had a ear infection either in Korea or since he's been home so not all kids have hearing problems he has excellent hearing. He also is very big he was 8.5lbs at birth and the doctor always coments on how most babies with clefts are usually small but Hayden definately doesn't fit that either.
Feel free to pm me if you have questions or just need someone to talk to. I found some great websites that have lots of info about clefts and what goes on. I know for me it helped to see pictures of what a repaired lip looked like (the only pic we got of him was before his lip repair) and how his lip and face would look like.
As for going to disney go and have a great time. We are going in may and I can't wait to take Hayden for his first trip to see the mouse.

 

[belle&beast]

Belle, your son did not get better until eight months? I might lose my mind before that. I also have a 18 month old DD who is making me pay for bringing home her brother. Did you son ever have an upper GI? We had one and they told us that his reflux is severe. I hope we will still outgrow it! We just stared giving him prevacid I hope it works. Did you have any issues with any problems from the reflux, throat problems etc? I am worried that all the spitting up will cause fluid in his middle ear putting him at a higher risk for hearing lose and speech problems in the future.[/QUOTE]

We had an upper GI when DS was 2 weeks and that is how they found the reflux- they were looking for something more severe because of his vomiting. My DS does have ear problems (chronic infections started at about 18 mo)and the ENT is watching him very closely right now. His hearing is fine but he always seems to have fluid. Luckily he is doing better and getting through the winter without an infection, just lots of fluid. Tubes are the next step if he can't stay healthy. I am a speech pathologist and my biiggest concern was language development and his vocal quality- both are fine. Hopefully you will have the same luck we have had!

 

[skoi]

This is a very timely and informative thread. Thanks to everyone sharing their stories. We're in the process of adopting a 19 month old girl from China who had a cleft lip only-- since repaired by doctors there. Does anyone have any experience with cleft lip alone? I haven't seen much on that.

Thanks,
Julie

 

[cindy21494]

Julie, sorry I can't help you with the cleft lip. I just wanted to say congratulations on your adoption. We are about half way through the paper work to adopt from China also. I would love to hear about your trip to get your DD when you get back.

Cindy

 

[gabbysmom04]

there are some wonderful websites with great information on anything cleft related.


widesmiles.org
cleftadvocate.org
cleftstories.com

I hope that these sites help. On the cleftadvocate site there are a ton of links to sites made by parents. I was reading through some last night and learned a few things from some other parents.

SKOI congrats on your little girl. I wish you the best of luck I hope she comes home soon.

Cindy, I hope your paperwork goes through quick!

 

[money4mickey]

Well...neither of my children have cleft/lip and palate...but I DO!! (we really need a smilie with a lip scar!). Anyway...I'm 31, unilateral lip and palate. I do have the normal hearing (very minor) and vision problems but all in all pretty 'normal' life. Happily married, 2 beautiful children, and just this last fall I started back to school to get my graduate degree in Speech Pathology (gee...go figure!).
I'm telling you all this so that you will know that there is life after a cleft!! Yes, I had many surgeries...yes, I got teased daily and it sucked...but it made me who I am and I am very proud of my cleft...a "war wound" of sorts!
I wish all of you who have children with clefts the best of luck. I always remembered that all of the surgery and teasing and appointments and problems were always much harder on my mom than me! Keep that in mind...children are made of steel if they know they are cherished at home!
Please PM me if you have any questions!
Kelli

p.s....here is a picture of me on my wedding day (3 years ago). I'm certainly no super model, but people rarely run screaming in horror!

 

[gabbysmom04]

moneyformickey, Thank you so much for posting. It is nice to hear from someone who had a cleft. It helps me to remember that he will not be like this forever. That there will be more to his life then just the cleft. Thank you again. BTY I love youre wedding picture.

 

[nelle]

Skoi, congrats on the adoption of your little girl! Are you going to be traveling soon to pick her up?

Cindy, congrats on your upcoming adoption! We checked into adopting from China but I don't meet the age requirement(I'm 28)so we adopted from Korea if we were to adopt again we would go with China.

Kelli, your wedding picture is beautiful ! Like gabbysmom said it's great to hear from others who have a cleft and hear their stories from growing up.