URGENT - CAN ANYONE RECOMMEND A CONSULTANT ORTHOPEDIC SURGEON

[willow2]

My best friend?s sister has just given birth to a little boy who has been born with Talipes and will need corrective surgery to both feet. Can anyone recommend a consultant orthopedic surgeon specialising in this field, in the London area. The family are prepared to pay for private treatment. Thank you.

Friend's ds had this - I'll ask her tomorrow I need to ring her anyway.

TBH i think the surgery is failry routine so the local NHS one will probably be as good as any. She live sin SE London, could easily have afforded private but AFAIK went NHS. I think from talking to friend the splints and physio are just as important as the surgery. I'll post again after talking to friend.

Spoken to friend. She had her son's done on the NHS by a very well respected surgeon MR Lahoti. Apparently he is very well respected in this field- she heard he was one of the top guys. She thinks he is now at King's

HTH

Before she goes any further she needs to find out about the alternatives to surgery. This is really important. My two and a half year old son was born with talipes (both feet). He has been treated very successfully using the Ponseti method, which is an alternative to having corrective surgery. There is increasing evidence that children who have corrective surgery will suffer foot pain and arthritis quite early in their lives (twenties/thirties). However once a child has had corrective surgery they can't then have Ponseti treatment. Please get your friend to research this. We had to travel to Sunderland to get my son treated, but Ponseti method is gaining in popularity and is available in London now (they do it in the Royal London in Whitechapel, partly because they were so impressed with how my son's feet turned out). Please get her to join the Yahoo talipes boards, the US one in particular has a host of information generally about Talipes and the UK one is good for who is now using Ponseti method in the UK. Also please get her to email me - you can do contact another talker.

Please tell her not to worry - the prognosis is very good.

Willow2 - in fact, would your friend like to come and meet Frankie and see how great his feet are? I would be very glad to invite them any time.

Can't stress the urgency enough - if using Ponseti method the earlier you start the better - I know many babies who started treatement at 1-2 weeks.

I can't leave this thread alone!

Just for information, the chap in Sunderland, who is the most experienced Ponseti practitioner in the UK, is called Gavin de Kiewiet.

He will see babies from outside the area and you don't have to go privately, so if your friend cannot find anyone in London who will do Ponseti, and they are prepared to travel to Sunderland weekly for three months or so (maybe a bit less), de Kiewiet will treat their baby.

The travel is a bit grim, but it was so well worth it.

Thanks guys for your help so far. Dino - your offer is so sweet. I think the best thing is if I send her a link to this page - and then she can log on herself when she is in better shape. I found out quite a lot of information this morning - and have sent her brother (my bf) a list of contacts and web sites that might be of help. The charity STEPS was particularly helpful - don't know if you've had any contact with them, Dino. Anyway, she had a horrendous delivery and is still recovering, so might be a while before she can log on or get someone to log on for her - but will try to keep you informed. Thanks again.

much sympathy to your friend Willow2

I know a mum who made her first trip with new baby to Sunderland in a wheelchair (travelling from the Isle of Wight, doesn't bear thinking about) because she had had so many stitches etc

That's really interesting dino. How do they do it?

dino - have emailed you directly. Post if you don't get it.

I'm going to try and do a link here

I don't know if that will work or not.

Basically the Ponseti method starts off by using manipulation and plaster casting. The baby's affected foot or feet are manipulated into position and a plaster cast is applied from toes to top of thigh to maintain the correction. The casts are changed weekly. Each time the foot/feet are rotated into a slightly more radical position, so that you achieve a gradual correction. The baby then has a very minor bit of surgery called a tenotomy to lengthen the Achilles tendon. I believe that Ponseti himself does this under local anaesthetic but in Sunderland they do it under general anaesthetic, so the baby has to stay in hospital overnight.

After a further fortnight in plaster, the baby gets his or her first pair of "Dennis Brown boots" which are orthopaedic lace-up open toed boots with a metal bar fixed between the heels to keep the feet rotated outwards into the correct position, to maintain the correction achieved by plaster casting and tenotomy. The baby wears these full-time until he or she is pulling themselves up to standing all the time and is obviously ready to start walking, then you leave them off for increasing spells of time during the day, but still put them on at night. They are worn at night until the child is about 4 (although Frankie is doing so well that de Kieweit thinks he may be able to dispense with them sooner than than).

Willow2, I can put you in touch with a Ponseti method surgeon, it really is the best way! There are loads around now, your friend won't have to travel to Sunderland! There are two or three in London that spring to mind. There will be no need to pay for private surgery, the Ponseti method is available on the NHS, and except in the most severe cases works really well, much better than surgery.

Contact me through Mumsnet, if you want some more details.

I have got to say they use the same method here in staffs. I never knew they used surgery for tallipes, until I read this. My knowledge is limited I know!

My friends daughter was born with tallipes and had to have manipulation and physio several times daily and some casting (although this was minimal) Now she does have to wear a padded insoles in her shoes, but I think this is because of flat feet not the tallipes. She walks fine though (is 3) and you cant tell at all

we see a nhs othapeadic surgeon and he is really good. I dont know if it is worth paying private for it, unless completely necessary

Thanks dino!

i find this really interesting and just had a look on the website and there's one in Manchester too,

Dr. Naomi Davis
Booth Hall Children's Hospital
Manchester, U.K.
Fax or phone UK 0161 220 5357
Email Dr. Davis

I hope this helps as it's a bit closer to travel than Sunderland! My dd had very mild talipes and i was told just to massage the foot and she's fine,(it was VERYU mild though),(did have to have an operation on her toes though! unrelated though!)

Oh, took me to long to type, obviously London would be better

When I contacted the Manchester doctors (there are two of them who do Ponseti) they were unwilling to take people from outside the Manchester area, but that is nearly two years ago now, so things might have changed.

oh, i thought maybe she was a new one that you didn't know about!!

No, I had a long email correspondence with one of her colleague, Dr Rupert Ferdinand.

I subsequently met her when I was up in Sunderland and she was up there watching de Kiewiet in clinic and picking up a few tips. She gets a good press on the UK talipes website.

My dd had her operation in Sunderland too

It's where i live so i guess if my dd's case was worse i'd have been in the right place

Oh right Angeliz, we'll be dropping in next time we're up then

Was it Mr de Kiewiet who did your dd's operation?

No, Dr Talkhani, he was nice
Let me know when you're next up and if i'm brave enough to meet you

I'll certainly let you know when we're next up, but sadly a meet-up is probably not a serious option as we come up and down from London in a day, so we just whistle in to the hospital, see de Kiewiet and then get a cab back to the station! Anyway, hope your dd is alright now. I think they are wonderful in that hospital - really friendly, and it's so big and spacious compared to teh Londond hospitals!

the maternity unit is fantastic too I was over the moon with the service and everything

hope your son is o.k, is he still having lots of treatment? My dd is fine btw