You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: Pierre Robin - Feedback on PRS Palate Surgery
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Over the period of a few weeks, various parents of children with Pierre Robin discussed things. This is the 4th in a series of 6. If you would like to meet some of these parents I suggest you join Cleft-Talk - the email discussion group.
"My daughter Justine has Pierre Robin Syndrome with a cleft palate. No surgery. She turns one year old tomorrow."
Hi! Have they given you an ballpark idea of when they will do the palate closure? At first they told me Pierce's palate wouldn't be closed until he was 2 years old because it was so wide (PRS). Then the cleft actually closed a bit on its own. He was able to have the surgery at 15 months. Am I correct in assuming that PRS kids wait longer to have their palate surgery than other CA kids? What about other PRS kids out there? When did your child have their surgery done, or when have the teams told you to expect palate closure surgery? I'd really love to get some feedback on this.
Amanda had her surgery on 8-13-96, she was 11 months old. She too was diagnosed with PR. She did not have the wide U shaped cleft though, hers was more like a Y. Narrow on the hard palate wider on the soft. The surgery wasn't as awful as we expected it to be. Once you get beyond the fact that your angel looks like they have been beaten, you can handle it all. The first couple of days are tough with sleeping and the discomfort but after 3 days Amanda was back to her old happy self (splints and all). Let me know if I can help.
They originally told us from up to 2 to 3 years of age. At her last clinic appt. they said maybe as soon as 16 months. She'll be 15 months at her next appt. We were told by different PS's that they wait that long to allow the jaw to grow so there is no danger of causing breathing problems once the palate is repaired and the tongue has no room. And yes because the cleft will actually grow together and thus allow more tissue to work with. I haven't met anyone online that had to wait until 2 to 3 years old. That may be in the most severe cases. In our area, for when they typically do palate surgery, around 13 months seems to be average.
Shelly, Thanks really for the offer of help. Alas, it comes a little too late. Pierce is 11 years old now. I just wanted to know at what age the surgeries were scheduled for some of the PRS kids. As to Amanda's diagnosis, she may have PR Sequence as opposed to PR Syndrome.
Hi Again! Pierce (now 11 years) was expected to have his closure at around 2 years but the cleft really did decrease in width - well over half as wide. When he was born he had nothing in the roof of his mouth except the gum ridge. The PS (not a young man) looked in his mouth when Pierce was 5 days old and said, "Gee, that's the widest one I've ever seen." Just what every parent of a CA child wants to hear. *g* Anyway the surgery went off with no problems at 15 months.
I just gotta find more info on this. ;~) Actually Justine's cleft looks more pointy in the hard palate, making it look like a Y or more like a V. She'll show it to you if you want to see it. ;~) I think she likes having it. Other than an occasional milk dripage her cleft doesn't seem to give her problems just a way of making noises no 'normal' human can make ;~). She sounds like something on the Exorcist and Godzilla. I'm sure her speech will be affected if they put the repair off for a long time but for now you can't notice.
We were told right from the start that Casey's surgery would be around 1 yr. But - he has the trach so we didn't have any airway problems to worry about. Actually the opposite, hoping to get the second palate closure done so the trach can come out, hopefully at the end of this week or the beginning of next week!
Hi Again, I actually read somewhere that the cleft grows together (I thought they really meant together like closed) for babies with PRS. I am really getting anxious for her next appt. but it won't be for a couple months yet. I was thinking her next appt is when she's 15 months but I think she'll be younger than that. She goes every 6 months and the last one was in July I think so she'd be around 14 months. We don't have an appt scheduled yet.
My kids are not affected with PRS, but I do have an answer for
you. The answer is yes, typically a child with Pierre Robin will have palate closure
slightly later than those with traditional clefting. The reason is two-fold. First, a
traditional cleft is not nearly as wide as the horseshoe-shaped cleft of PRS.
Therefore, there is a lot more tissue
to work with from the very beginning. The longer you wait, the more tissue will naturally grow. Second, while the chin is tiny, the tongue needs the space of the nasal area. With the palate repaired, that extra space for accommodating the tongue is closed off, creating or exasperating breathing blockage.
Meghann had her surgery at 1 year of age...I think we were given a ballpark of 2 years too. However as Meghann approached the 1 year mark the doctor felt that things were coming together pretty good and that he had enough material to work with to perform the surgery..so almost 1 year to the day Meghann underwent her palate repair surgery....
In general terms I have found that the doctors like to give the outside date so parents are not as upset when their child is not ready for a particular procedure.. If the child is ready before, then it makes the parent feel that they must be doing something right (or the doctors are doing something right or combo thereof) that enables their child to have surgery ahead of schedule. Also the doctor doesn't get continuing questions about "Well I thought you said that junior might be having his surgery when he was 6 months old...well he is 5months 3 weeks and 2 days old and you haven't said anything about him getting repaired.. What's wrong?...
Elizabeth's, who has PRS, surgery was done when she was 2 years
and 3 months old (July 96). She had a submucous cleft and a bifid uvula. The palate
closure surgery is the same though. Her PS wanted to wait until she had more tissue
to work with and more space to work in, therefore he waited until she was 25 months.
Her surgery recovery was almost a full 10 days before she even started to act like
her old self again.
My Jimmy had a submucous cleft palate and a bifid uvula. It wasn't known that Jimmy even had a bifid uvula until he was about 3 months old. His uvula was so far back and hidden behind his tongue that two doctors had to dig deep to finally visualize it. He had difficulty getting his breath at times while he was on his back but was never diagnosed with PRS. As he grew, his uvula became more visible.
Wow I wonder if Justine may have a uvula after all. No one
really "dug" so to speak to look.
Maia had her surgery at 19 months, they wanted to make sure her airway was a bit wider, but she still had a bit of difficulty. Another mom I know (not on cleft-talk) had her daughters surgery at 9 months and she went into respiratory distress...she recommended waiting as long as possible. I agree, the older the better, especially in the case of a very narrow airway. I guess it depends on the child. Also, I do believe Maia's cleft grew a bit more to let them use more tissue...she didn't have much to work with, it was a very extensive cleft.
Boy that's scary. How is the baby now? What did they have to do then? I wonder what justified to the doctors doing surgery on her so soon as to cause her to go into respiratory distress. That was the big reason they gave us for delaying Justine's surgery. They actually came out and told us that if they do the surgery too soon she'll suffocate. I'm thinking they'll wait until she's more like Maia's age for surgery although they said at best they could do it at 16 mos. She doesn't snore or give any indication that she ever had breathing problems but you just don't know. As far as speech is concerned I believe she's doing as well as can be expected so I'm not overly anxious although it would be nice to have it all behind us.
We will find out at the end of Jan. when Alyson will have her palate closed (PRS very wide cleft)...She will be 7 months old then... Her doctor told us last time that she didn't have enough up there yet...That it will close some on it's on...
Does anyone know how much they have to weigh to have the palate closed?...Alyson's doctor told us that she didn't weight enough the last visit... I'm getting worried, because at 4 1/2 month's Alyson still only weight's 10 lbs. 6 oz. She is eating cereal, but she won't eat anything else.
Hi! I am not sure about there being a weight restriction on palate surgery. Usually they like it to close a bit on its own first. A rule of thumb - babies should double their birth weight in 6 months and triple their birth weight in one year. If you feel that Alyson is not gaining an adequate amount PLEASE check with your regular pediatrician. Formula is available with a higher calorie count for children with feeding difficulties - Down's Syndrome (poor sucking reflex and tongue thrusters too). If she is being fed breast milk, perhaps you could supplement with the higher calorie formula.
Solids are not an easy thing to deal with when a wide cleft is involved. It requires a great deal of patience. Keep with it. Apples are usually one of the first foods introduced, however, Pierce rejected them. Then my pediatrician said that they add citric acid/ascorbic acid (to prevent the stuff from turning brown) and the apples might be burning his nose. So I tried with something that did not have added citric acid (or ascorbic acid) and he ate the whole jar. :)
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