Any cleft mommies here?

mamahawk12

Hi ladies!! I'm not sure if this is the right board for this, but it seemed like the most appropriate choice. We just found out our son will be born with a bilateral complete cleft lip and palate. We declined the amnio so we won't find out if it's isolated or part of a genetic syndrome until he's born. Just wondering if there are any other cleft mommies on the board? I'm pretty active on my BMB but since his diagnosis I suddenly feel like I have so much less in common with everyone - while everyone else is planning nurseries and registries, we're interviewing craniofacial specialists and touring hospitals. 

Anyways - just looking for another "community" TIA!!  

SoundersChick

I'm a cleft mom. Actually my son, who will be 1 on Monday, just had his palate repair surgery this morning. There are a couple other moms on this board that are cleft moms as well. Where are you located? There is another August 2012 mom that is having a little boy with a cleft lip and palate. If you have any questions feel free to PM me and will be as helpful as I can.

mamahawk12

Aw, happy birthday to your sweet boy. My DS will be 2 tomorrow - so just a couple days apart We live in the Capital area, so we are leaning towards Children's National Hospital, but there is another great option (Fairfax) that we need to check out too.

How did your son's palate surgery go?? How old was he when he had his lip surgery? They did a fantastic job - he's adorable!!! Did he use a NAM or Latham device?

rsd12

My oldest was born with Cleft too (unilateral complete cleft lip and palate). For the most part (surgeries aside) he is a very typical 6 year old kid! We are in the process of relocating and starting the search again for new doctors and craniofacial teams. I would be happy to answer any questions you have. We love the craniofacial team my son has right now, so we are even considering the drive (only 2.5 hrs from new location, but we are moving to the Boston area with excellent doctors too). So much to process again ; ) I think what surprised me the most was that I did not feel that different from other struggling parents with newborns or even as my son has been growing. I found the first year to be the toughest, but I have been amazed the strength and resilience my son has had. Good luck!

mamahawk12

Rsd  - I'm sure your son will be in great hands in Boston! Although I can imagine it would be hard to leave a team of doctors he's been with from the beginning. Was your son's cleft isolated, or part of a syndrome?

I'm worried I'll be a wreck because DS was the easiest, most low maintenance baby. Breastfed like a champ, slept great, and has generally been very healthy. I know this experience will be a lot different in comparison - especially in regards to feedings. I'm pretty bummed about not being able to breastfeed, but hoping that pumping works out.

SoundersChick

His palate repair went great. His plastic surgeon was very happy with how everything went and the way that it all came together. He was just over 5 months went he had his lip repair. He used the NAM and we started that when he was 6 weeks old. His orthodontist at Seattle Children's was very pleased with the progress in the early weeks. His palate would move 1-2mm each week and was coming along beautifully.

Then we had an allergic reaction to the tape and left it out for a couple days. It wouldn't go back in so we had to have a second one made. That one worked for a couple weeks before we had another bad reaction to the tape. We finally decided that the NAM just wasn't for us and that we should move forward with surgery asap.

His plastic surgeon and orthodontist were very understanding and we set a surgery date for October 7th. I went absolutely great and just 8 hours after surgery he was smiling and eating like a champ. Here is a progress photo of what he looked like before surgery, the day after and then 6 months after.

 

rsd12

I had a hard time with not being able to breastfeed my first too. But, I hated pumping... I felt so guilty that I did pump for about 3-4 months (fortunately produced a lot so had enough for about 6 months)... but don't be hard on yourself. Plus you will have your older son... do what you can do! My 2nd and 3rd sons were soooo easy.. but a lot of this has to do with just kind of knowing a bit more than with my first ; ) But we could not imagine our life without him, just the way he is! His cleft was isolated, but he also has Duane Syndrome which is an eye issue - not related to the Cleft. Poor kid, but he does so well with everything, and none of it seems to impact him...he has made wonderful friends, including some girls that want to marry him ; ) My younger sons have had other minor issues, so our kids are perfect just the way they are! Just take it one day at a time... and you will be surprised after the first surgery and you mourn the cleft ; ) also my son had a really good experience with the Latham appliance (he did have a wide cleft). Latham at 2months old, lip and gumline repair between 3-4 months (not a great time for us, but very rare to have issues... we were just in that group), palate repair at 11 months and he was walking around the next day not even phased. He had a lip revision at 4 and 3/4 old (he was so awesome). Just had ear tubes put back in in January (he actually was happy to get them). His next surgery will be his bone graft next year. We are open with him about his cleft, but we don't talk like it is a big deal. It is not who he is. I love sharing baby pictures with him before the repair too... it's funny what kids don't notice!

mamahawk12

Sounders - So glad to hear his surgery went well! I am already really nervous about the surgeries - DS had tubes put in about a year ago and at the time, I thought that was a big deal - ha! Thanks for sharing your progression pics, it's amazing what they are able to do. I will admit however, those little cleft smiles are definitely starting to grow on me. I'm definitely not as scared now as I was those first couple of days. 

mamahawk12

Rsd - I know I will hate pumping too - especially when I have to go back to work. And chasing after a two year old, keeping a newborn happy, and pumping every two hours will definitely be a challenge. 

Judging by what they can tell from the u/s, he will most likely need an appliance of some kind. His cleft is looking pretty wide, but I guess you never know 100% until they are here. I'm really nervous about the bone graft - it never dawned on me (until after some scary dr.google research) that they would need to harvest bone to repair hard palate and/or gum line. I'm sure your son is going to do amazing - it must be so great for you to look back at all the progress he's made over the last several years. I'm already proud of my little guy, and he's not even here!

AshWest

Hi there,

My daughter was born 01/01 with a bilateral cleft lip and palate. We have been doing the NAM process since she was about 3 weeks old and are scheduled for surgery 06/22. I was terrifed when I found out, imagining the worst but so far it has been much, much easier than I thought. She eats great, is growing well, the NAM is the BEST decision we could have made, her progress is unbelievable. Although it's definitely a huge commitment and can be challenging, the results are beyond what I could have imagined.

I told some mom's here a while back that if you decide to go with the NAM, look into a skin-prepping ointment or liquid. It has saved our girl's face, we haven't had rash issues, her skin is in fantastic condition and it helps the base tape stay in place. I would be more than happy to dig out a link if anyone is interested. I think it was like $11.

Good luck to all of you!

SoundersChick

AshWest:

Hi there,

My daughter was born 01/01 with a bilateral cleft lip and palate. We have been doing the NAM process since she was about 3 weeks old and are scheduled for surgery 06/22. I was terrifed when I found out, imagining the worst but so far it has been much, much easier than I thought. She eats great, is growing well, the NAM is the BEST decision we could have made, her progress is unbelievable. Although it's definitely a huge commitment and can be challenging, the results are beyond what I could have imagined.

I told some mom's here a while back that if you decide to go with the NAM, look into a skin-prepping ointment or liquid. It has saved our girl's face, we haven't had rash issues, her skin is in fantastic condition and it helps the base tape stay in place. I would be more than happy to dig out a link if anyone is interested. I think it was like $11.

Good luck to all of you!

We tried the skin preppy ointment and it didn't work for us. It just made the rashes on his face worse.

mamahawk12

Oh gosh, I'm not really familiar with the devices to know anything about taping. But we officially have our first meeting with the cranio-team at Children's National next week. I'm so ready to meet these folks and get a better idea of what we will be dealing with! 

SoundersChick

meaknigh:

Oh gosh, I'm not really familiar with the devices to know anything about taping. But we officially have our first meeting with the cranio-team at Children's National next week. I'm so ready to meet these folks and get a better idea of what we will be dealing with! 

Not everyone has issues with the tape. Edmund just has very sensitive skin and nothing really helps it when it comes to tape. They had tape on his face while he was in surgery on Thursday and a couple hours after surgery the areas that had tape were bright red and puffy. It's just something that you sometimes have to work around.

AshWest

SoundersChick:

AshWest:

Hi there,

My daughter was born 01/01 with a bilateral cleft lip and palate. We have been doing the NAM process since she was about 3 weeks old and are scheduled for surgery 06/22. I was terrifed when I found out, imagining the worst but so far it has been much, much easier than I thought. She eats great, is growing well, the NAM is the BEST decision we could have made, her progress is unbelievable. Although it's definitely a huge commitment and can be challenging, the results are beyond what I could have imagined.

I told some mom's here a while back that if you decide to go with the NAM, look into a skin-prepping ointment or liquid. It has saved our girl's face, we haven't had rash issues, her skin is in fantastic condition and it helps the base tape stay in place. I would be more than happy to dig out a link if anyone is interested. I think it was like $11.

Good luck to all of you!

We tried the skin preppy ointment and it didn't work for us. It just made the rashes on his face worse.

AshWest

Stupid computer, wouldn't let me type.

 

That's terrible about his skin, just what you need is something ELSE to worry about, right? We have been very lucky with our girl, and I thank my lucky stars everyday. We were given a recommendation to use DuoDerm by a friend, a more heavy duty base tape, flesh colored and SUPER thick. It really did a number to her skin. Just goes to prove what works for one, won't always work for another.

 We went to her weekly dentist appointment this morning, for adjustments to her "appliance". I am SO over it today, she had a major meltdown and it breaks my heart to have to put her through that. I just have to keep telling myself, its just 7 more appointments and then surgery and it will be calm for a while.

 Sorry it turned into a vent, but you guys are really the only ones who understand.

SoundersChick

AshWest:

Stupid computer, wouldn't let me type.

 

That's terrible about his skin, just what you need is something ELSE to worry about, right? We have been very lucky with our girl, and I thank my lucky stars everyday. We were given a recommendation to use DuoDerm by a friend, a more heavy duty base tape, flesh colored and SUPER thick. It really did a number to her skin. Just goes to prove what works for one, won't always work for another.

 We went to her weekly dentist appointment this morning, for adjustments to her "appliance". I am SO over it today, she had a major meltdown and it breaks my heart to have to put her through that. I just have to keep telling myself, its just 7 more appointments and then surgery and it will be calm for a while.

 Sorry it turned into a vent, but you guys are really the only ones who understand.

No worries! We all need a place to vent and there aren't a lot of people I know in real life that understand what I'm going through. This board and some support groups have been lifesavers to me during all of the stuff we have gone through.