P-flap

posterior pharyngeal flap or p-flap for short
This proceedure is done after lip and palate repair if the childs palate is still too short. It takes tissue from the back of throat and loosens it on 3 sides by cutting and leaves it connected to the blood supply on one side and the tissue flap is moved and "flapped over" and connected to the end of the back of whatever palate is trying to be lengthened.

How do you know is the child needs it? First of all Dr can SEE if palate is short. Second the speech therapist can do simple manuevers to see if air is escaping out of the mouth behind the palate. Third there are some more invasive tests that can also be done to evaluate like scoping by an ENT to watch muscle movement and some other tests.

Why do all these? First of all, you don't want to have any unnecessary surgeries. Second, overcorrection of the short palate can block the back of throat too much and lead to sleep apnea and snoring which are no fun and can create more problems.
So, some kids with palate repaired need to have some sort of lengthening done to palate. That was the case with our oldest son.

Our experience:
We went in early morning for surgery and he was out after 2 hours. By noon he was in ICU. For anyone not experienced with cl/cp surgery, most stays are 1-2 nights in ICU until child can start eating and drinking enough and swelling after surgery goes down. They usually stay in ICU as a precaution so if there's any breathing or airway problems it will be noticed right away. So staying in ICU has it's own level of associated fun. There are bells and monitors going off constantly! One major plus is nurses have fewer paitients so child's needs are addressed immediately.
After any surgery with young children there's usually crying screaming and or a disoriented state. This can be a little scary for parents and kids. We always bring a familiar toy and blanket to help. Our son does not do well with Demerol yet they often insist on using it. He screams and hollers usually until it wears off. After he came to us in ICU I had them give oral liquid pain meds right away. He was awake enough to take it. They alternated a Tylenol with codeine and a regular Tylenol bc he did not like the taste of the codeine product.
He vomitted and his face was swollen and he complained of stomach ache for a while after surgery. We gave a phenergan suppository which worked great.
He took only a few sips of liquid the first night. He does not eat popscicles OR jello (never has don't know if he was traumatized by them in the past surgeries??) so his doc ordered full liquids like ice cream that evening when he came to check on him.
By the next morning he was significantly better and the swelling had gone down due to the steroids.
We went home and he has gotten slowly better each day since.

What did I not expect? Swelling was a litttle more than I thought, but resolved quickly.
He complained a lot about neck pain for about a week. Stiffness in the back of neck. In fact he was standing on our bed about a week after surgery and bounced as he sat down and he cried and caught himself in the back if the neck and said it hurt. Usually the device they use in surgery to stabilize the neck connects to their mayo instrument stand and the neck is hyperflexed. Imagine leaning your neck totally back and opening your mouth as wide as you can and leaving it absolutely still for 2 hrs. I would have some crick in MY neck!!
Also he had a bit of snoring for the first two weeks. The first 6 days he had me a little scared at times. We had him sleep in our room on a futon and he seemed as though he was stopping breathing. He also had a lot of nasal congestion and swelling due to the probing of the nose for the fistula and I think this caused him not to be able to breath out of his nose and the pflap swelling was keeping him from breathing well out of his mouth. Not sure if this is "usual" for pflap or how much nasal swelling there usually is.
The only other thing is we have Tubes in the ears and after surgery he had some drainage from one ear.
It has now been about 4


weeks since surgery and he is completely and totally back to normal.



- Amanda & Roland

Cleft lip and palate

I thought i would write this for anyone who is considering a child with cleft lip/ palate or even if they are not: People ask is cleft lip and palate a difficult special need? The answer is mostly no and sometimes a little yes.
First of all the majority of cl/cp kids are healthy and happy. Kids from China rarely have associated "syndromes" you can read about, although it does occur. They need several surgeries anywhere from 2-10 during childhood but most are outpatient or overnight stay with fairly easy recovery. There are doctor visits and check ups lots of folks use a "cleft team" which are usually located at larger metropolitan centers, but you can find experienced plastic surgeon almost anywhere. Speech therapy is needed in varying degrees depending on severity of cl/cp, age of child at repair and general temperment and ability of child. Some need little others need lots. Some need private speech, others just need what school or early intervention programs can provide.
The part where I feel it can be a little challenging SN depends mostly on access to specialists and speech therapy. Also the surgeries can be scary. It's hard to watch your baby be wheeled of to surgery time and again for surgery. Knowing they will wake up hurting. I wonder if at some point he may say no more surgery, too much pain. Already he refuses pain medicine after surgery
because it tastes nasty.

Only other thing I can think about is some parents would not want their childs special need to be obvious to others. A child missing limbs or with cl/cp would be more obvious wheras some conditions might not be so obvious. For us that was not really a concern but it is for some.

These are just some general thoughts. If anyone is thinking about adopting a child with cleft there are tons of Internet resources and several great and informative yahoo groups to join and find out more!! Obviously cl/cp can have some challenges but is a SN that is not a big deal. Most of the doctors appointments are arround surgical times. Our son has been home 3 yrs and had 2 palate surgeries plus tonsils/tubes so 3 surgeries.

Speech therapy has been covered by insurance and he gets extra speech at school. The last year we went with just the school speech, but now that he's had palate extension we will resume private speech as well.


- Amanda & Roland

Cleft lip and palate repair

Several folks have emailed me and wanted to know about our surgery experience with cleft lip and palate. Our son was born with cleft lip and palate.
He had his first surgery in China by Love Without Boundaries a GREAT organization that helps children around the world. He was actually on their website homepage for a while before we went to get him in 2007! He was about 15 months old at that time.
When he came home to US at age 3 and he had palate repair about 4 months later. The surgeon told us his cleft was large, one of the biggest he had ever done. It seems a lot of us China adoptive parents with cleft kids hear that phrase. Anyway, he stretched the tissue and made a new palate. The problem with stretching the skin so far is that some of the tissue just cannot survive either the trauma of surgery or just having to be stretched so thin. So, we noticed a few months later he had a small hole right in the middle and a little "ridge" where the skin had met in the middle. Not much but enough to make it hard to make to "p" sound and other sounds needed in English speech! So we went back to surgeon and he said it was too soon for more surgery. He recommended we see orthodontist to make an "obturator" which is sort of like a retainer to cover the hole. So we did. The obturator stayed in 1 1/2 years and then in the fall of 09 one of the bands broke (think like braces) they do that especially when they've been in a while and the mouth is growing,etc. So we rushed to orthodontist and removed it. It just popped right off easily.
Next we went back to surgeon to re-evaluate. It was time for more surgery. A posterior pharyngeal flap, or p-flap. Two surgeries actually. First tonsils needed to come out. The tonsillar tissue is around the area in the back where the p-flap would be and surgeons like it to be gone so tonsils are buried then cause trouble later when they grow or get infected jeapordizing the palate repair. So, out with the tonsils!! As a side note we also had tubes in ears at the same time. Our son never had them put in although surgeon had recommended it at time of first palate surgery. We didn't have an EnT where first surgery was done and didn't feel the risk of anesthesia was worth it given he had no problems with hearing or infections. But since he was having tonsils, ENT said he would look at ears and if there was fluid, place tubes. Well, there was fluid so my boy got tubes.
Without tonsils now and with tubes, we waited 2 months for healing and school to be out and ready for surgery number 2, the p-flap.
NOTE: I will end here and post another about p-flap surgery separately.



- Amanda & Roland