I a mum to Sarah born 7 June 2007.  She had a long gap OA which did not grow together over the 3 month optimal period.  On 1 October she had an op performed by Dr Foker from Minnesota to put the two ends of her oesophagus into traction to force them to grow.  The traction op took 7 hours and then she was in ITU for 2 weeks fully sedated and paralysed.  Threads were attached to each end of her oesophagus and gradually tension was applied.  We put our faith in the consultants and they have not failed us.  The technique has worked and at the end of the two weeks she underwent another lengthy op to join the ends. 

She is making a remarable recovery, being wakened from her enforced sleep 2 days after the second op.  A barium meal this week has shown that the join is good and she is back on milk feeds mainly by gastrostomy but starting oral feeding which will take some time for her to get used to but we are hopeful for the future.  We know that she will need dilatation as there is a bit of narrowing at the join and she will need a further procedure to deal with reflux but things are progressing.

We have had the best of care in Edinburgh Sick Kids, not just for Sarah but for all of us as a family and we cannot express our appreciation in words.

I would love to hear from anyone who has experience of progress after such an op or from anyone undergoing the same experience we have had over the last 5 months.

Yvonne

Hi Yvonne
Hope Sarah is doing well. I don’t think there are many babies in the uk that have undergone the Foker procedure as yet, but I’m sure it is becoming more common as more surgeons train in the technique. You were fortunate to have DR Foker himself, as we had previously only heard of children who had to travel to USA for his care. Our daughter Isobel as born with long gap OA AND TOF 15 months ago, and initially we had not heard of the Foker technique. By the time we discused it with her surgeon she was 5 months old and had other complications, which he felt would have made it unsuitable for her. She subsequently had a colon interposition,which is less commmonly done now, so we have found it dificult to trace families with young children who have had this surgery. We have found the American support group site eatef.org very informative too and there appears to be a number of children and families on there who have had the Foker technique,so you may find it useful to contact them.
Best wishes
Joanne

When Dr Foker came over to do your daughters operation where you told about another family he was going to operate on in Leciester????  We were that family (we heard informally that he was in the Uk to operate on Oliver and another child in the Edinburgh area before he went onto Germany.) 

Unfortunatly Oliver was not operated on as he went into heart failure which made another repair attempt impossible at that time, we have however had 3 failed attempts by UK surgeons using the Foker technique. 

How is the repair going now?

Hello Michelle

We didn’t know about you but we knew he was going to Germany after operating on Sarah.  So sorry to hear that you have had so much trouble.  The original repair was a success but Sarah has not had an easy time of it since.  She has had countless dilatations, two fundoplication ops and then in May this year her surgeon discovered a fistula between her oesophagus and lung which had possibly developed from a leak or abcess at the join - we are not really sure.  Her surgeon consulted again with Dr Foker who had seen this happen before and she had the damaged section removed and a new join created - she was very ill at that time.  She had improved immensely since then with only a couple of dilatations since.  We are struggling to get her to eat anything and she is purely jejunally fed.

Her surgeon did tell us before her original op that a small number of repairs had been done in the UK but only the ones that Dr Foker had done were a success.  Has your surgeon been in contact with Dr Foker?  If you want to talk I would be happy to give you my phone number.  We are also going to the TOFS Conference this year.

Best wishes

Yvonne

Ive just noticed that your little girl also has the same birthday as Oliver!

It doesnt sound like you have had a good time with it at all!  Hopefully things start to get better as she gets older.  Out of curiosity what kind of things have you tried to encourage eating - Oliver has an esophagostomy and I managed to get him up to eating full (sham) meals before they made him completly nil by mouth and he now tries to steal food from his sister- he knows that he isnt allowed to eat it anymore but likes to play with it and pretend to feed other people.

Oliver is also purely jejunally fed but after 3 failed Foker tries Dr Foker didnt feel it was possible to try again (alot of damage has been caused to the pouches perforating due to overstretching.)  We are therefore still without a repair and Oliver is now considered “unrepairable.”  Previously Oliver had a gastrostomy but because it leaked acid so much it has made his stomach unuseable and his intestines have “melted and fused together” we are going for more surgery on the 22nd of october to try and repair the damage to his intestines and try and get his stomach functioning again so fingers crossed to get off the 24 hour feed.

I am desperatly trying to get hold of Diane from the office to talk about the conference but we keep missing each other I do really want to attend however have childcare issues (I have 3 children under 2 1/2 the youngest is only 4 weeks and breastfed) and I also go on holiday the following monday.  I don’t really want to post my number on here but my email is .(JavaScript must be enabled to view this email address).

Hope to speak to you soon

Michelle

Hello Michelle

I’ve just read your thread with Yvonne and just wanted to wish your family and Oliver well for his surgery in October. I’m so sory that he has had so many unsucessful surgeries. The Foker technique is so new in this counrty isn’t it. We also had contact with Dr Foker around the same time as you and Yvonne, as our daughter isobel was born long gap nov 2006. We were told he was coming over to the uk, but by then Isobel had had other complications and surgery and an oesphagostomy made which our surgeon advised us that would make Foker technique very inadvisable. He also warned us that recurant fistulas are a recognised problem of the technique and Isobel had already had a recurrant fistula, so it was out of the question for her.
To cut a long story short she has had two replacement surgeries since- the first using her colon , which ultimately failed, and the second using using her stomach which was pulled up into her chest and so far has ben sucessful. Olivers situation sounds very complicated, but I hope his surgery goes well and they will find a solution in the end for him.

All the best
Joanne mum to Isobel age 2 yrs 10 months.

Hello Joanne

Thanks unless we get cleared for a general very soon its unlikely that we will be able to have surgery in october if he is well enough then we should be able to go from j to g feeds.

It sounds like all of our children with OAs have a rough time regardless of what surgery they have I guess with Olivers cardiac and lung conditions it may just be easier to leave him unrepaired but the idea that he will never be able to eat is very final especially when I got him tolerating sham feeds (he also has an oesphagostomy) really well.  Around last christmas he was taking 3 full meals a day and bottles in between but now he has been completly nil by mouth since February he has forgotten again but likes to pretend to eat.

Out of curiosity why did the colon op fail? - If they do ever attempt another repair this will be the route they go down but at present his intestine is to damaged to try.

Hope things are going ok for Isobel now

Michelle

Hi Michelle

Isobels colon interposition which she had done when she was 7 months old failed for a variety of reasons. It refluxed badly , so we weren’t able to continue with Gtube feeds and had to have jejtube feeds instead. She had lots of post op complications involving her chest and then we a had a bad winter, so the following spring she had contrast studies done to see if she was suitable for a fundiplication of some kind. Unfortunately when she had the contrast it showed that the colon replacement had grown far too much and had looped up in her chest. The following september when she was almost 2 yrs old she had surgery to try and see if they could shorten the colon replacement and do a wrap to prevent reflux, but the blood supply wasn’t good enough and they proceeded straight to a gastric transposition instead during the same operation. It was very disappointing that the colon replacement failed but her gastric transposition seems to be working well, and she’s gradually increasing her oral intake and we are reducing her jej feeds.

We agreed on the colon interposition option initialy with her surgeon, due to her underlying chest problems, as he had concerns that her chest would be worsened by coping with her stomach being in her chest, but in the end there was no other option.

If you wanted any more info on colon replacement surgery there are some adults who replied to us on a colon interposition thread that we started on the forum- you might have already seen it. I think they have a facebook site too. A lot of people have had sucessful colon replacement surgery, and I think Isobel was unfortunate in what hapened to hers. I hope I haven’t made you feel too negative about Olivers options for the future.It must be very frustrating for you all when he sham fed so well. Why has he had to stop-was he aspirating?

If there is anything else I can help with don’t hesitate to ask
Joanne - mum to Isobel.