Those Operation Dates!

[Mark (UK)]

Hi Everyone


Firstly, thanks again to Jacqui and Scardycat1 for their further replies which have been very helpful.


We saw the third team on Friday, here's a summary of their stance - I hope there's nothing in here that worries others if it's different from whatthey have been told, I'm just trying to let you know what they are telling us so you have as much info to hand as possible (which is what we've struggled to achieve!):


o Operation at 6 months - this is a combination of safest age/size for the anaesthetic, baby on solids, palate fixed before speech sounds start


o They believe waiting 12-18 months for soft palate repairs is outdated - this follows some French specialist's methods. They believe that the US and Canada are lagging behind Europe and that 12-18 month waits now are inappropriate


o The operation makes no incision into the hard palate at all - they believe this prevents any additional problem with jaw development


o Their follow-up operation rate is only 2.4%


o They are quietly confident that speech therapy wouldn't be required


o Grommets (ear tubes) are not always required and are only done if the ENTs specialist believes it to be necessary. Again though, this would be tied in with the main operation for simplicity.


o They believe there is no orthodontal problem associated with soft palate problems, just normal kids problems that are not related (we've found it very difficult distinguishing between what's related to the palate problem and what's just a "normal" problem for kids sometimes)


o They would only keep her in for 1 or 2 days after operating, then let her home. We clarified this position with team 2 who had told us 5 days in hospital - they said they will only let us go once correct feeding is re-established, which sounds more sensible.


o No arm splints required as baby won't be able to reach the stitches with her fingers, plus it would hurt too much for her to pull on them. We would have to be a bit careful she didn't stick anything hard and long into her mouth though


o There are no neurosurgeons in the UK teams as they are not required for palate problems - this is a US/Canada thing where the palate teams are combined with craniofacial teams for which this is necessary.


So where has this left us? Actually, teams 2 and 3 are very similar, and we have found out that they both follow what they consider the "new" style of operation repair, ie. 6 months and no incisions into the hard palate. We have also found out that both surgeons are considered the top 2 palate surgeons in the UK, which is also reassuring. Team 1 is not an option for us, we have also found out that they are going to be disbanded, basically because they are not up to the job (great).


Our advice to anyone in the UK (and anywhere else for that matter) is to ask questions incessantly - don't be afraid to ask for more and more detail, as you get a better understanding of what's involved so you will need more information from them. You effectively have 5 or 6 months to make your decision, so don't feel pressurised into going with the first team you see. Most importantly of all, fight to get as many referrals as possible - unbelievably we had to fight with our GP to get the 3rd referral (we said we would go privately if he wouldn't refer us, however the hospital teams don't do anything differently for private patients and give any fees to charity) - the hospital were appalled at this so I forwarded their message of disgust to my GP who quickly changed his mind about the referral!


UK people, I can't stress enough that you need to get the right advice... if anyone would like more info then feel free to contact me at sladeeee@my-deja.com. Otherwise you need to speak to CLAPA directly (their number is on their website at www.clapa.com).


Cheers




-Mark.

[Anonymous]

Mark, glad you found the info you wanted .... and your advice on using CLAPA is, I think, crucial. They can have an informed discussion with you. I know in the UK all the english and welsh hospitals are under review under CPAG. This has just been completed her in Scotland and there are now just two centres of excellence.
For both my kids (lips mainly, not palates) I was happy with our local team, and have to say more than happy with the results. I would recommend my surgeon to anyone. TO be honest, I never even considered shopping around, (and I'm normally quite stroppy) as I was happy to have all our treatment at a centre near us. And as I said, the results were great.


PS, did you see the Daily Mail today, and the new photo-imaging system. It was so cool!

[Scardycat1@hotmail.com]

It sounds like you really did your homework, Mark. Like I told you, go where you feel the most comfortable for you and your child. My son is 19 years old now so I would hope things have changed since then with some of the ways things were done. Bob was 3 months when they closed his lip. then a year old when he had his first palate operation. We never saw a neurosurgeon, and I don't believe there was even one in the program except for maybe some special cases that were more involved. we basically saw a plastic surgeon and pedidontist. When we went to a clinic we would see the Ears nose, and throat doc. We never really got to know him much. But my son was very close growing up with his plastic surgeon and Ped. He did have a speech teacher in grade school but never had to go to a speech therapist and his speech is fine. He is taking public speaking in college right now and is the first one to volunteer to give a speech.
Best Wishes in all you do. Keep in touch

[jacquimeechan@hotmail.com]

Dear Mark


I am glad you are asking all the questions. I also went down that road, because like you I felt that if I understood everything that was going to happen, I could cope better. Never be afraid to ask questions!. If anything it lets the "Teams" know that they are dealing with real people and not just another patient.


With regard to the orthodontist part. In Glasgow "all" cleft palate and cleft lip children attend for Orthodontic assessment. It doesn't mean that they would have had problems with their teeth, whether they had a problem or not. With the palate repair, possibly my daughter had both soft and hard palate, they definately keep an eye on their teeth. As I said before she didn't need speech therapy input at all, and certainly no gromets in her ears.


When she was young she did have a few ear infections, and the one thing that I would say is and please check this with your surgical team. They wanted to take her tonsils out because of childhood sore throats, but luckily the ENT surgeon who was at another hospital was a bit doubtful because her tonsils seem to have thickened by nature to cover the space at the back of her palate. Possibly that is the reason that she never needed speech therapy as nature adapted to suit. Twenty year's ago my daughter was in for a week. She was in one day prior to operation, and on a drip for two days. Luckily she could drink out of a cup, so she could drink without putting anything in her mouth. She certainly had splints on her arms when she was in hospital, but came out without them. She wasn't allowed to feed herself(remember) 22 months. I had to liquidise everything and feed her with a plastic spoon. This was for six weeks (possibly shorter now), and the day I was told that she could go onto a normal diet I took her from the clinic and bought her a packet of crisps. I had been sick looking at mashmallows !. It will be all worthwhile and I can assure you Mark, you will think back in twenty year's time and think "My God", when she is a university and wanting money to go out with her friends to the dancing.


Once again keeping asking the questions, "Its your right" as a parent. Everything will be fine in the end. Good luck. Jacqui

[GSBowden]

Mark,
I responded under the other thread - Operation Dates - at some length but had a couple additional comments. One of the major reasons for our daughter's soft palate operation at 10 - 12 months was to allow good healing and scar maturation after the lip closure at 3 months. Our daughter stayed in hospital only 24 hours after each surgery. You are right about the expertise of European teams. I have heard that the Scandinavian countries are the best.
Good luck.
Greg Bowden

[Mark (UK)]

Hi Greg


I saw your reply down below (it's hard to read these discussions sometimes!) - yes, it certainly seems there are different timings when the hard palate or lip is also involved. As you say, there are growth concerns where the hard palate is concerned, which in our case is not a problem. So it seems to us at least that we are following the latest knowledge in having the op at 6 months, although there are still other less significant discrepancies regarding details such as when to wean onto solids, splints after the op, etc. These are less of a concern to us.


Re the hearing, that is interesting and it's the first time I've heard that the soft palate muscle is directly involved in the eustachian tube pressure clearing - I think I had been told that it was the ability to form a vacuum when swallowing that affected the eustachian tubes clearing the ears... but I guess either way the repair of the soft palate should significantly improve this.


The north of England is still cold and windy by the way, it's much nicer down south


Cheers




-Mark.

[Anonymous]

"Should" is the operative word in your comments on the hearing. The actual repair of the soft palate is only half the battle. After the repair, there is the question of how "sufficient" or capable the muscle of the soft palate is.


As a general comment, I strongly advise parents of cleft children to study the anatomy of the palate, throat, mouth, ear, etc. I make good use of endless hours spent sitting in doctors' offices by studying the posters on the walls.


Cheers.


Greg