Does anyone have experience with Mr Keily at great ormond street? Or of SCTs???

[greengoose]

We are trying to decide what to do.
I am 23weeks pregnant and my little girl has a Sacracoccygeal Teratoma (a large tumour growing out from her lower spine). This means, in brief, a very high risk pregnancy and major surgery for her if she can make it that far.
We live in Devon, but are under consultant care in Bristol (St Michaels). They have been amazing, but the surgeon there we spoke to said she has only had three such ops to do in the last three years. I know that at GOSH they see about one a month.
The surgery is complicated, and although it usually goes well, there are risks of complications leading to bowel and bladder problems. The surgeon who we have heard deals with this most frequently is Mr Keily. if we do go there I'd have to have c section at UCH.
I'd really value anyone's experiences of GOSH, and particularly Mr Keily..... Sorry if my posts a bit muddled, this is all quite hard to write about....

No personal experience, but I know he was involved in a hugely difficult operation to separate conjoined twins from Ireland last year. The op was successful and the boys are home and well.

The very best of luck.

Thanks, I had read about the twin surgery, and the op on my little girl is much more straight forward, so that's good.

Does anyone else know of mr Keily or have experience of the paediatric surgical team at GOSH?

I have my next scan on Monday, and it's terrifying waiting to find out how much the tumour has grown. If its still small I might start to let myself have some hope. It's strange feeling her kick so much now... Fingers crossed for Monday I guess...

To me mr Keily is probably the most amazing man on this planet. In 2010 mr Keily and his amazing team saved my little girls life by removing a bowel blockage.

My little girl was only 18 months and if it wasn't for him we would have lost her.

GOSH is a miracle and the staff there work miracles every day and for that me and my family are eternally grateful!

I hope your scan went well and I wish you the very best - you are in safe hands! X

My little boy had surgery at GOSH when he was 8 days old. Different area (neurosurgery) but I found the hospital to be a fantastic place. Very positive and inspirational. Our consultant and team seemed so specialised and capable. I thought they were doing amazing work. It sounds from the other post here that your surgeon is similar. Good luck for you and your daughter.

Sorry I've not said thank you sooner to all of you who replied. We have an appt with mr Keily on fri.... I am scared about what he might say, but so glad to have got a slot with him.
Our little girl is holding in there, although her tumour continues to grow, and is now causing a urinary obstruction which is making her kidneys swell.... We have to hope her body gets stronger faster than the tumour I guess, but we are very scared, and worried she's in pain.
I'm 27 weeks now, and the plan is to get to 35 at least so she's strong enough for surgery..... Although its flying by with the two week scans, 8weeks still feels like an eternity for us to get through.
Thanks again for the well wishes.... And if anyone else has been to GOSH for anything similar, please let me know how you found it....