Different Operation Dates?

[Mark (UK)]

Hi everyone


Just stumbled across this site, I hope you don't mind me posting here as I'm actually in the UK.


We have a gorgeous daughter who arrived on New Years Eve, and she has a cleft soft palate. As we have no history of this in our family, we have been struggling to find information and help on this (especially as it took the hospital 3 days to realise the problem) - the most apparent thing we have found is that different specialists and teams have different procedures. I thought I would tell you all what we've been told to date, and I would be very interested to hear in anyone's opinions on what they agree or disagree with, *especially* if you also have experience with a cleft soft palate only (since I'm sure additional lip problems add extra complexities with regard to surgery timings).


The first team we saw said they will only operate between 10 and 18 months old. They stated this was because surgery could affect the development of the jaw. They made no mention of hearing problems but stated that speech therapy would probably be required. They said the reasoning behind cleft lip/palate was still unknown. They made no mention of feeding problems. They did not fill us with confidence!


Team 2 at a different hospital said they operate at 6 months - they stated the reasoning for this is that the palate is essential for speech development and therefore needs to be fixed before they start forming speech sounds. They wait until then as they like the baby to be on solids (we must start at 12 weeks!) and to have built its strength up more. They said that the surgery will not affect jaw development, that this is only genetically affected. They sorted out our little girl's feeding problems immediately (we switched to soft squeezy bottles with soft teats). They said she will almost definitely need grommets for her hearing (ear tubes). They knew the latest information on researching cleft lip/palate and that geneticists have traced this to a single gene in mice etc etc. We have more confidence in this team but they are stating complete opposites to team 1!


We are seeing team 3 on Friday although we gather from initial discussions they run on similar lines to team 2.


Finally, I have seen from this site that others have had soft palate operations within weeks of birth. Does anyone know the reasoning behind this?


We have also been advised that increasing dosage of folic acid tenfold 3 months before and after conception will reduce the risk of another cleft problem by a factor of ten. Again, I've not seen or heard this elsewhere?


Oh, one last thing, the speech therapist strongly warned us against using dummies (pacifiers) as this restricts the movement of the tongue and the learning process of talking. I've not seen or heard this anywhere else but it certainly seems to make sense although I'm not sure it will seem so clever at 4am


I'd be amazed if any of you got this far, well done if you did I would be very interested in hearing your opinions, especially in terms of surgery dates...


Thanks!




-Mark.
England

[Mark (UK)]

A couple more things:


o I noticed that US teams have a neurologist - UK teams don't have this. Could someone explain their role please?


o I understand there can be hearing loss from birth, yet as far as we know this isn't going to be checked until just before the operation at 6 months. This seems strange to me, I would have thought the sooner they check it the better? Did others have hearing checks done sooner, and if there was a problem what were the temporary/permanent remedies?


Thanks again




-Mark.
England

[Pat Bacon Smith]

Hi Mark and congrats on your new little princess.


There is a variety of responses possible to your questions. I have been in the cleft world for 8 years now and my experience is that each team will have a different protocol based on their experiences. I will tell you that I beleive your team two has it correct. The soft palate or velum is teh muscle that closes off the throat so that certain speech sounds can occur -- these are the sounds that need air pressure to build inside the mouth and to be forced out the front of the mouth examples are p b if air escapes through the nose then the sounds are not possible. I beleive the timing of your daughter's surgery should be as indicated by your team two -- especially with a soft palate cleft -- it can be repaired as early as six months or even earlier by some teams. There is some controversy about early palate repair -- I know of one family whose son had his reapir at four months and then went on to breastfeed. But the norm for palate repair falls in the 6 - 12 months range in the states and in canada which is where we live. I think waiting until the 18 month mark may negatively affect your daughter's speech capabilities. My daughter who is now 8 had an extensive cleft and she has never had or needed therapy for speech, although she is assessed yearly. Speech therapy is common but not always needed. It depends on the length of the soft palate and its functioning. My daughter also had a sus or pacifier and it didn't do any bad thing for her speech. But I should also tell you that she gave it up willingly at around four months of age because she just didn't want it anymore.


As to the ears, the idea is that if the baby cannot hear, she cannot mimic sounds and learn speech. The eustachian tubes in a baby lie sort of horizontal anyway and are somehow connected to that palate so if the palate is not functioning as it should there is more opportunity for problems to occur with the eustachian tubes and also the hears. Cleft affected kids tend to have ear problems but some have none at all. It really is an individual thing and needs to be assessed patient by patient.


Hope this helps you some. Sincerely Pat

[Mitchy]

My kids had cleft lips and only partial cleft palates (not needing surgery) so I can't directly help you. But you might want to head to the British cleft lip and palate association (CLAPA) site, which has a teenage club left clip and parents section left clip 2 on a yahoo host site, just ready and waiting for all these kinds of questions.... see you there!

[Scardycat1]

Mark, my son is 19years old now but when he was born he had his lip closed at 3 months old and his cleft was operated on at 1 year. He had tubes put in at 3 months old. Fluid can build up causing hearing problems. He never had a ear infection. Even though they said that cleft children can be prone to them. And when he was 3 years old he no longer needed them. His hearing has been fine. The doctors would do little tests to check for hearing when he was an infant. things that you can do to see if she is hearing. Like clapping your hands or making noises to see if she goes in that direction. But at 6 months they were able to do a bigger test to check the range of hearing.
He never saw a neurolgist. Our state has a program espically for this and there was a team of doctors, plastic surgeon, pedidontist, orthodontist, ears nose and throat doctor, speech therapist, physcologist, pediatrician. When a team works together they can give the best treatment possible. Good luck in finding the right team for you and your baby. Make sure you are comfortable with the team. That is the most important thing. Is your confidence in the team.

[Mark (UK)]

Thanks for the pointer to CLAPA, we have already been talking to them - I was particularly interested in hearing about non-UK teams though as one concern I have is the insularity of the UK teams and whether they are necessarily up-to-date on everything.


Cheers




-Mark.

[Mark (UK)]

Thanks for the reply Pat - it does sound like team 2 are most in synch with current practices in the States and Canada.


As far as we know they won't do any hearing tests until 6 months though, and this concerns me a little - don't they do anything more before then?


Cheers




-Mark.

[Mark (UK)]

Thanks for the reply Scardycat1 - I was just wondering whether your son had the ear tubes because he was being operated on to close the lip? I'm just thinking maybe the reason we're being told the tests/tubes would only happen at 6 months is because that's when they would operate for the cleft palate? I imagine they wouldn't be too keen on a small baby having 2 operations within a few months if they could delay the tubes until 6 months...


Cheers




-Mark.

[Scardycat1]

mark,
The reason for his tubes they told us was that cleft children are more prone to fluid built up in the ears and could cause infections and hearing problems. They did both the lip and tubes in the ears at the same time because it was only one operation instead of two seperate ones. And when he had his surgery again they would put tubes in again. He never had just a surgery for the tubes. The biggest thing with tubes in their ears is watching to make sure you don't get water in them. When your giving her a bath or if she goes swimming, she can wear ear plugs so she doesn't get water in them. let me know how make out with the third team of doctors you see. I will keep you in my prayers.

[jacquimeechan@hotmail.com]

Dear Mark,


With regard to different operation dates. My daughter was operated on at 22 months, the reason being was to make sure all the growth in the soft palate was complete. This was to make sure that after the operation, there would be no more growth
that would then slacken the palate.


With regard to the heredity factor. There was nothing in my family, and I didn't take drugs during my pregnancy. I kept really good care of myself and did everything that was asked of me.


I found that I was looking for an answer, but sometimes "its just nature taking a day off". In retrospect, if that is all that is affected, then we were all very lucky. I worked with women who were having much worse, lift threatening condition with their unborn child.


My daughter now twenty years of age is at university and will hopefully graduate later this year. She didn't need any speech therapy etc.


With regard to feeding. There wasn't squeezy bottles when she was a baby, but I used to just put bigger holes into the teat and touch it slightly with my finger when she got tired with the sucking. She was put on solids by myself very quickly, 6 weeks. I kept her to gluten free foods, and as soon as I could she took her milk from a lipped cup. There were no books etc to let me know the best way re feeding etc. I just found them myself.


In summary, I then went on to have further two "normal" children. I had more feeding problems with them than I every did from my daughter with a cleft palate. Every baby is different and your baby may never find a problem. Babies are very resourceful and she will find and let you know by the way she is feeding the way that suits her!.


I know that I was horrified that they were not prepared to operate until 20-22 months, but in retrospect they did me a big favour. It is possibly different now with new techniques, but I know in Yorkhill Hospital, which is world famous for cleft repairs performed the operation at this stage. Never be afraid to ask question, I did and this made me understand the issues better.


I didn't make my daughter different, so she wasn't different, and wasn't aware of her palate problem until she was well into school when I was filling in a medical form for her.


I hope this is of help to you and your wife. Good luck with your daughter's operation and to your happy days together

[GSBowden]

Mark,
I see this thread is a few days old now so I'm not sure if you'll see this but here it is anyway.
Based on my knowledge, the major reason for delays in surgical dates concerns the hard palate more than the soft palate. Some doctors (a minority opinion, I believe) prefer to wait a few years to close a cleft in the hard palate so that the bony tissue there will fully develop. This is balanced against the majority approach of closing the hard palate early to aid speech development. This is much less of a concern in the soft muscle tissue of the soft palate.
We have two (count em, two!) daughter with complete cleft lip and palate. The second arrived just eight days before yours. They will have (or had) their lip closed at 3 months, soft palate at 12 months, hard palate at 4 years.
The reason for the ear problems is this: the muscle that makes up the soft palate is the same muscle that pulls the Eustachian tubes open, allowing the middle ear to drain. With the cleft palate, there is no tension on that muscle to allow that to happen. The hearing test before the tubes are put in is probably fruitless as the baby probably has some fluid in the ear because of the above problem.
I had the pleasure of living in Northern England for a few years and miss it terribly. Cheers.
Greg Bowden