How do they repair a cleft palate?

When the roof of the mouth doesn't grow together properly, the condition is called a cleft palate. To repair it, the surgeon will make an incision along both sides of the cleft.

Tissue is drawn together from both sides of the cleft to rebuild the roof of the mouth.

Many people have been asking what is involved in fixing a cleft palate.    I found these diagrams to be the most helpful when trying to understand what happens during the surgeries. They are from this site: WFU Cleft Lip and Palate Repair  

To see what Paige's Cleft is like, why they occur and her personal treatment timeline click here: Paige's Cleft Journey

Cleft Palate Surgery

In some children, a cleft palate may involve only a tiny portion at the back of the roof of the mouth; for others, it can mean a complete separation that extends from front to back. Just as in cleft lip, cleft palate may appear on one or both sides of the upper mouth. However, repairing a cleft palate involves more extensive surgery and is usually done when the child is nine to 18 months old, so the baby is bigger and better able to tolerate surgery. 

Paige's cleft lip was considered incomplete because it did not extend into her nostril all the way and was only on the right side; but her palate is considered to be somewhat wide and affects both sides of her mouth, involving the soft and hard palate. You can also see that there is another submucous layer of her palate closer to her sinuses that is also clefted, more on the right side than the left. That is why food come out of her right nostril. 

Currently her skin is so clefted down the middle she does not have a visible Uvula. The doctor said he will try to make one but often, as the tissue heals, it just pulls up again and it won't be as visible as a natural one would be. Speech therapy will be a part of her life 6 weeks after surgery. Her roof will get tough and the bones may even grow a little closer together but it will never be as hard as someone's palate that is not clefted. It should be completely functional though. Holes called fissures can open back up, but are very rare. These usually close on their own but may require future surgery to re-close. Our doc says his fissure rate is VERY low. And that's another reason why we chose him.      

 

To repair a cleft palate, the surgeon will make an incision on both sides of the separation, moving tissue from each side of the cleft to the center or midline of the roof of the mouth. (See diagrams above right)This rebuilds the palate, joining muscle together and providing enough length in the palate so the child can eat and learn to speak properly.

The doctor will close both layers. He said that the incisions left behind will remain raw and open and the open raw areas will fill in on their own like wisdom teeth holes. I remember this when I had mine out.

Recovering From Cleft Palate Surgery

For a day or two, your child will probably feel some soreness and pain, which is easily controlled by medication. During this period, your child will not eat or drink as much as usual -- so an intravenous line will be used to maintain fluid levels. Elbow restraints may be used to prevent your baby from rubbing the repaired area. Your doctor will advise you on how to feed your child during the first few weeks after surgery. It's crucial that you follow your doctor's advice on feeding to allow the palate to heal properly.

Paige's Surgery will be in the Morning on Dec. 12th and we will be at the hospital for 2-3 days depending on how well she is eating. The doctor said it is important for her to be on the IV fluids so that she does not get dehydrated while not eating much; as soon as she is eating ok he wants to send us home because he thinks kids thrive better in their own home than in a hospital. His post op instructions seem a little stricter than some. She is supposed to wear her arm restraints for 3 weeks and eat only pureed baby food for 6 weeks. That means no rice puffs, cheerios, bits of apple, banana, cooked brown rice etc....she hasn't been a fan of regular baby food lately so this will be interesting. Maybe I will puree some avocado and add some whole yogurt.  Most likely birthday cake (Jan. 2) will not make the list of ok food for palate surgery recovery....so we are thinking a big pile of whip cream to get those classic first birthday pics.

Children with a cleft palate are particularly prone to ear infections because the cleft can interfere with the function of the middle ear. To permit proper drainage and air circulation, the ear-nose-and-throat surgeon on the Cleft Palate Team may recommend that a small plastic ventilation tube be inserted in the eardrum. This relatively minor operation may be done later or at the time of the cleft repair. In addition, surgery may be recommended by your plastic surgeon when your child is older to refine the shape and function of the lip, nose, gums, and palate.

This site has some info about cleft occurrence statistics and a great anatomy of the inner ear and how a cleft palate affects hearing and speech. 

http://www.leap-foundation.org/cleft-lip-and-palate-information/

Paige had her first set of eartubes at two months. She is getting over a month long ear infection and the ENT is watching her tube on the right because it is about to fall out and isn't working properly. This is why her palate surgery was postponed another month and pushed into December near Christmas. We may have another ear tube surgery in the near future.  See the blog posts about her previous ear tube surgery: Ear Tube Posts

Perhaps most important, keep in mind that surgery to repair a cleft lip or palate is only the beginning of the process. Family support is critical for your child. Love and understanding will help him or her grow up with a sense of self-esteem that extends beyond the physical defect.

And this is why we are so appreciative of all the support, love and prayers our loved-ones continuously send our way!

Here are a few more diagrams of palate surgeries if you are having trouble visualizing.

Our doctor said the diagram below is closest to what he does and it show that there are several layers that need to be sewn.  He looked at the diagrams above and said sewing the flaps to that small point in the middle is a week point and could lead to fissure.  He also said that there will be a small hole behind Paige's gums where the notch in the bone is and for some kiddos who have a complete cleft in their gumline up to their nose, until they get a bone graft about 8 or 9 years old.  So some liquid may come out her nose a little for years to come.

Another technique that they do where they sew the tissue flaps together in a zig-zag but our doctor doesn't do this technique for the palate but uses it for submucous clefts only.    

Here are the diagrams of a lip repair surgery as well. Paige's scar follows this pattern almost exactly but on the right side.

A cleft lip is a separation of the upper lip that can extend into the nose.

To repair a cleft lip, the surgeon will first make an incision on each side of the cleft from the lip to the nostril.

The cleft lip is then drawn together and stitched to create a normal "cupid's bow" shape to the upper lip.

The scar left after surgery will gradually fade with time.

It's been awhile....I guess I've been busy raising a beautiful baby

It was one year ago August 30th since we found out Paige would be a girl, healthy and bjavascript:void(0)orn with a right unilateral cleft lip.  This logo was one of the first images I associated with joining the Cleft Family.  September truly was my personal Craniofacial Acceptance month as I processed what this would mean for my baby.  I also needed the support of my faith, family, friends and the Cleft Lip/Cleft Palate board on Babycenter.com. This group has meant soooo much to me and really helped me through the different things we had to go through. Thank you all! I hope that our experience here can be helpful for others who have the first year to get through.  You can do it...it will all get better...and each part comes one thing at a time. You too will look back a year after finding out and wonder.

Here is this last year in review:

The minute we saw her she was perfect! So many worries melted away.  The fact that she had only an incomplete cleft was a surprise but so was her complete cleft palate.

Breastfeeding didn't work for us as hard as I tried and hoped.  I have been exclusively pumping for almost 8 months and hope to go to at least a year.  We tried the haberman, pigeon and finally just a regular nipple with a cross cut. After her lip surgery she didn't even need to have the nipple cut because she figured out her own way of bending the nipple against her bottom lip to get the nipple to squirt out into her mouth.

At two month she had tubes put in because she hadn't passed her hearing tests due to fluid behind her eardrums they could not drain due to her palate.

These were the first and last days of enjoying her wide smile.  I miss it...

Surgery
At three months she had her lip/nose repaired.  The pics below was our first time seeing her new face and trying to feed her after she woke up from anesthesia.

A cupid's bow...something so many take for granted.
First smile post surgery...

Learning to tape nose stents and no-no's was a learning process...
At 4 months with out nose stents for a day for Easter.


We got better at taping them using the tabs cut in half from clear rite aid bandaids.

Wore nose stents until six and half months when she decided to swallow them and poop them out
.  

Now she is 7 months, almost 8 and enjoying NO nose stents, solid foods, crawling, pulling up and saying "ma ma ma"! Basically just being a happy baby who has food come out her right nostril from time to time. Her palate surgery will be in late Oct. or early Nov.  Not looking forward to it but looking forward to getting through it and returning to just regular baby things and maybe a little speach therapy. 

Some tears from time to time....

She is very proud of pulling up!

Paige is Here!

Paige Hart DeVaul

Born January 2, 2011 @ 10:35am

8 lbs 10 oz & 20" long

Okay okay...she has been here for two months. But shouldn't my first blog since her birth be an announcement. I apologize that I have not kept up with this since her time on this earth, out of the womb....but as many of you know, it takes a little bit of time getting used to the whole parenting thing.  I hope to add to this blog more regularly in more bite sized portions...this first post will be a doozy, as we catch up a little on Paige's beginnings.  

Birth

I went into labor at 2am on 1/1/11 and was convinced that I would have a New Year baby...but after 32 hours of labor and very very slow progression, Paige was born via Cesarean on the morning of January 2, 2011.  Before I could see her....I heard everyone say, "Oh she has so much hair...now that's a good sized baby."  Phil got to see her come out and was right by her side as she was weighed, measured and assessed as healthy.  She was quickly wrapped up and put on my chest.  I held her with my own hands for minutes just looking into her big wide gray eyes. That is what I remember the most.  I had to remind myself to look at her lip.  It was so secondary to what was happening the moment I laid eyes on the most beautiful baby I had ever seen.  I was a mom....she was ours!  We had made this little being and were now entrusted to care for her.  

Most commonly asked questions...

How does she eat?

I was encouraged to try and breastfeed her right away but because we couldn't trust how much milk she was getting, due to her cleft, we had to bottle feed and supplement with formula for the first couple of days.  Phil and I had it down.  I would breastfeed her for five minutes and then hand her off to Phil while I pumped the rest and he fed her milk I had previously pumped and then finished up with formula until she was full.  

We started using the Pigeon nipple which is really wide with a cross cut that allows the milk to flow a little faster for her.  She drank so slow...we were excited when she drank 10ml in an hour.  We then tried the Medela Special Needs Feeder, which are special bottles that have long nipples that go far into her mouth and has a part of the bottle that allows you to squeeze milk into her mouth.  The only thing is this bottle costs over $25 a piece. Both of these bottles are specially made for babies with clefts but many babies are successful with regular bottles with cross cuts that you do yourself.  For cost reasons we decided to try this and settled for Dr. Brown's bottles.  It's nice to just use a bottle that looks like one any baby would have.  She can now get down 2-3oz in 30-60 min.  It only blurts out of her nose from time to time, and she really hates it when it happens.  She just looks at me with tears in her eyes, like "Why?" The feeding nurse at CHOC and her pediatrician are very pleased with her weight gain and are not concerned.  She was 9 lbs 10 oz two weeks ago.  They require her to be 10 lbs and 10 weeks in order to do her first surgery.  

Ultimately she does not have enough suction to breastfeed and therefore I am exclusively pumping.  I was very happy that I have enough milk to have a supply in the freezer and she does not need any formula.  It is a lot of work but I am happy to do it.  She is completely worth it.  As of today I have pumped more than 293 times and over 140 hours. Fun facts available because of an iphone app tracker.  As Phil likes to say..."we live in the future."    The nice part of bottle feeding is that I have the help of others to feed her, like Paige's wonderful daddy and even her little cousin, Lily!   

What is her Cleft like?

We were happily surprised that her lip was considered an incomplete cleft.  That means it does not go all the way through her nostril.  We were not able to tell this on the ultrasounds.  Her nostril is intact but a little flattened.  Her case should be a little easier to fix.  Her gum line is affected but it is also incomplete.  Which means there is a notch but it too does not go all the way into her nose.  Her soft and hard palate are completely clefted.  It looks like an open slit in the roof of her mouth and because of the separation her uvula is separated and appears to be missing.  The surgeon will probably sew it back together so it looks like she has one.  Her lip and nose will be fixed about 3-4 months and her palate will be at 9-12 months.  I hope to get a better picture of her palate soon and I will post it once I do.  You can always click on the "Paige's Cleft Journey" page to the right for updates on her surgeries and such.   

Our little girl...

In some ways its like her cleft isn't even there for us and truly is just a part of her, but in many ways it gives her personality and I think its cute.  I heard before that people miss their little ones' first smiles after surgery, and I am beginning to totally understand that.  Here she is at 5 weeks old giving her very first smiles. 

        

See her smiles in action...