Intro & Q?s for anyone with Cleft Experience!
I'm jumping right in to say Hello and test this whole thing out! Total newb here (even though I've been a lurker for way to long...) My sig name tells it all...I'm a new SAHM and I recently feel like I'm going *batty*!! I need to branch out and talk to real adults, not just my adorable three month old! My husband works late and I spend countless hours looking for answers to my new mom questions on this board...so I figure I better quit lurking and say hello.
My ds is my first baby, after infertility and trying to concieve for three years - my little ivf miracle! He was born with a cleft lip and palate, and absolutely precious 
For anyone with cleft lip/palate experience...Anyone use the Nam?
We adjusted to my ds feeding issues fine, we use a habermann and he also has a NAM to mold his lip into position for surgery. We also use dynacleft tape. So far he is progressing AMAZINGLY and the lip looks fantastic. BUT as of lately DS has discovered his hands and I feel like I spend half my day re-doing his mouthpiece after he pulls it out. It is so frustrating! If anyone has any tips for keeping it in...Also, has anyone used arm restraints for surgery/prior to surgery? (Snuggle wraps or NoNos?) Any recommendations? And lastly, how did your child's surgery go? ours is scheduled for the end of next month and I'm trying to get prepared (emotionally, and any supplies needed).
If anyone is newly expecting a baby with a cleft or has any questions for me I would be happy to answer. We absolutely adore out little man and handling the cleft has been a minor stumble in the grand scheme of things Thx in advance!
Re: Intro & Q?s for anyone with Cleft Experience!
My son is now 10.5 months and was born with a complete unilateral cleft lip and bilateral cleft palate. He had his lip surgery back in October and has done beautifully.
We struggled for 3 months with the NAM starting at 6 weeks. The first 2 months went pretty much without a hitch with the exception of some reactions to the tape. We didn't use the dynacleft tape because our team didn't offer it. We just used steri strips attached to rubber bands. After one particularly bad experience with the tape tearing his cheeks apart we had to leave it out for a couple days to let his cheeks heal and in that time his moth adjusted enough that we had to have a new one made.
The second one worked for a month. Then he got really good at pulling it out and then the tape tore his cheeks up again and when we went to put it back in after letting them heal he would choke on it. We struggled with that thing for 3 months and after 2 NAMs we just decided to get surgery scheduled ASAP and give up on the NAM. Our orthodontist looked so defeated after we told him that we felt we couldn't do it any longer.
Edmund did great through surgery. He had a rough night the first night and had to be put on morphine so that we all could get a little sleep. The next morning he was smiling and happy as could be. We were given oxycodone for pain relief once we got home but never used it. He was fine using a dose of Tylenol every 4 hours.
We didn't use any of the NoNos, arm restraints or swaddle blankets after his lip repair. he did really well at leaving the stitches alone. He will have to wear the restraints after his palate surgery at the end of next month though.
Here are a couple pictures.
Hi! My 2.5 year old had a complete cleft lip and palate. We have ben through three surgeries so far.
1st) One day shy of two months old, we had his cleft lip repair. He did wear the no-no's and he managed to get them off on about the 5th day before suture removal. I will tell you that I was not ready for how he would look and act after the surgery. He had morphine eyes, that glassy not there kind of look, and still had the stitch in his tongue in case of swelling. I have pictures of that time & if you would like to see them you can email me at lrp04a at yahoo dot com.
2nd) Palate surgery at 9.5 months old. That one was harder. They told us we could go home the next day. The only requirement was that he eat around 5 oz. We had surgery on a Thursday and went home Monday morning. He had to be on a cup, but he wouldn't drink out of it. I feed him by syringe for about 2 weeks.He wore no-no's for four weeks.
3rd) Lip revision, last June, at 2 months shy of 2 years. It went really well. He rarely wore the no-no's because he understood he would have to put them on if he touched his face.
Let me know if you have any questions.
I'm glad you posted this. We just had a follow up ultrasound with Maternal Fetal Medicine to look at some other issues and during the scan they found out our baby has a cleft lip and palate (looks like a complete unilateral on the right side only but of course they wont be sure until he's here). It was a total shock to us and I'm trying to adjust to the news and get as much info as possible about what to expect.
Out of curiosity, why is there such a variation in the age people have the first surgery done to repair the lip cleft? I've heard of some people doing it as early as 8 or 10 weeks and others don't get it done until they are five or six months. I was hoping to get it done as early as possible but I wondering why some babies have to wait (or why some people choose to wait, not sure if it's doctors or parents choice) a lot longer. I just want to know what to expect and what our options are going to be. The genetic counselor we saw is sending us to Seattle Childrens Hospital to meet with their specialist team before baby is born. That way we will have an idea of what to expect, but we don't get to meet with them for at least a month from the sound of it.
Mrs. RTH, congratulations on your upcoming baby
I can imagine how shocked and confused you are right now- I remember how hard it was when we found out about the cleft and palate at 20 weeks. I was like you, wanted all the information I could get. We had many ultrasounds at Fetal Maternal, and I have to tell you that it WILL get easier. The more time went on the more excited I was to see my baby each ultrasound. In a way, the cleft made me want to just love and protect it even more.
The age variation is because each cleft is different. Some are wider, on both sides, some have more extensive affect on the nose, etc. So for example, my son has a bilateral and orignally they told us his surgery would be around 12 weeks. Well, we are using the NAM appliance to stretch the lip and bring the cleft together, and the lip is almost ready. But his nose still needs some time to get streched out, so we rescheduled the surgery. So my sons surgery wont be until he is 5 months. This is because we want the best results, the first time! We didnt want to rush and have the surgery done by 12 weeks, and have him need plastic surgery later in life. I remember feeling like you before he was born- I just wanted it done with! But once I realized the cleft really wasnt that bad, I just want it to look the best for him. So like I said, it depends on each childs cleft how long it takes.
I hope you do some research on the NAM, and can find a team that offers one. It has made the world of a difference - even if it is SO hard some days (mostly now that he his older, early on it was no big deal). My son got his when he was 6 days old, and the results are amazing.
Also, I know you didn't ask - but before my ds was born the cleft seemed like the biggest deal. It was all we thought about. And once he arrived we realized he is still beautiful, and the cleft is just a small part of it all
It really does get easier, and you will get to a point where you look back and think why did I worry so much? lol.
Good luck to you, if you have any other questions or would like to see pictures of my ds cleft, nam, progress etc let me know
Thank you AshWest! I will have to look in to this! We have had pretty good luck so far with the tape, I use baby oil to take it off and that works great- it just peels off! But I prep would be nice because there are days when he does have a reaction to the tape's glue. thx!
Thank you AshWest! I will have to look in to this! We have had pretty good luck so far with the tape, I use baby oil to take it off and that works great- it just peels off! But I prep would be nice because there are days when he does have a reaction to the tape's glue. thx!
Sorry for the double post! I?m still learning this forum stuff?
chefs_baby thank you for your info! It?s so helpful to hear your surgery experiences. I will definitely talk to my dh also about being prepared for how ds will look coming out of surgery! Thank you.
Sounders thank you for sharing your experience as well! Edmund is such a cutie J I definitely can understand why you were ready to just get the surgery over with! I?m feeling the same way. It was easy until he turned 3 months and now it?s a struggle. I am glad to hear your ds did well with pain and leaving the stitches alone. Sounds like our sons will both be in surgery the end of next month. Good luck! Ours is scheduled for the 30th.
Here is the link to the Skin-Prep.
https://www.amazon.com/Smith-Nephew-420200-Skin-Prep-Non-Aerosol/dp/B002NSABKQ/ref=sr_1_1?s=hpc&ie=UTF8&qid=1332440006&sr=1-1
This is the description is provides- Protective liquid dressing may reduce adhesive removal trauma during removal of tapes or films. Allows skin to breathe so tapes and films may adhere better
When we remove the tape, it pulls right off and has never gotten stuck (knock on wood) and will be slightly pink due to the removal but within a few minutes goes right back to normal. She has never cried during removal either, so it appears it doesn't bother her. I usually spray it on my fingers and then apply it to her face, I don't feel comfortable spraying anything that close to her eyes/mouth. Once it dries it leaves a very silky feel. I hope this helps someone!
We had 4 different surgery dates. They scheduled us for the middle of August thinking that we would be ready. He would have been 3.5 months. Then they decided that his cleft was too wide and wouldn't be ready for the August surgery so then we scheduled it for the middle of September.
Everything was looking perfect for a September surgery and then we had the issues with his cheeks and things were slowly starting to slow down. We went from moving 2 mm a week to .5mm a week. So then we scheduled surgery for the end of October. Then the second time his cheeks were torn apart we decided we were no longer going to continue with the NAM and they bumped surgery up to the first Friday in October.
The surgeons at Seattle Children's told us that they normally wait until the baby is 3 months, over 10lbs and has a hemoglobin count of at least 10. Edmund was 5 months and 1 week when he had his first surgery. His second surgery, palate repair, will be 3 days shy of his first birthday.
Sorry to hear that you're having to go through this. My LG didn't have a cleft lip, but had cranio. And I just wanted to let you know that from my experience with cranio, I've been told many times that Seattle Children's hospital has a wonderful craniofacial department.
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