TOFS forum

Great Ormond Street Programme Tues 15th May.

2012-05-16T06:10:32Z

I chanced to watch this program last night whilst also trying to watch the new series of Silk on BBC 1. From the schedule I thought maybe their was going to be someone with Tofs or OA and so I had put this program on to record. I then watched some clips of it after Silk had finished and was totally humbled to Sebastian and his very brave Mother. I just wish Sebastian had gone with his instincts and decided not to go ahead with the operation. His life may not have continued for long had he not had the op who can tell how long that life would have been but what I didn’t understand was why didn’t they attempt to reconstruct his oesophagus with more of his colon or something else why did the surgeons decide to do a gastric pull up???

I had a long gap OA and had a colongraph transplant to the Oesophagus when I was a twelve months old back in 1972. I feel so very, very lucky that the surgeon Mr Keith Dancox Roberts did the op the way he did because I never had to go through any further surgery. I still have a few probs with reflux occasionally but nothing major. The boy in this program originally came from Colombia and they said the colon had become twisted.. Is that because they didn’t do the op properly? Or is it just something that just happens sometimes in this sort of op?

On the outside I look completely normal although smaller in stature but very, very lucky to have had such a skilled and brilliant surgeon as I did from Birmingham Children’s Hospital. I really don’t think they get the credit or the publicity perhaps they should do a program from there instead one day!

Considering 2nd child!!!!

2012-05-15T20:01:18Z

Evening,

I am hoping I can get a little advice from you all who have gone on to have another child after having our special TOFs.

Max is now 20 months and we ae enjoying him grow every day. He still has a long way to go in terms of eating but he is truly remarkable in what he has achieved considering he has been in hospital 3 times so far this year and been in ICU for 2 weeks!!!

I remember reading an article in the magazine about a mother who went on to have another child. She said she didn’t want her little boy asking her why he didn’t have a brother or sister. it was very moving and my husband and I are at that stage now where we feel Max would make a great big brother.

Did anyone get tested beforehand? I was hoping I could hear our people’s thoughts and experiences of going though the same emotions.

I can honestly say that I would have 2 + of Max as he is such a happy boy who makes my world seem a better place but unsure of chances of having another TOF.

Claire

depression and ptsd

2011-01-02T00:37:31Z

hi all, recently ive been fnding it hard to cope with all my medical problems. it seems that im only just taking in all thats happened to me, it probably doesnt help that im suffering once again and getting treated poorly by the nhs. i also had a scar repair and its the first surgery that ive had since i was 7? im now 23 and that operation was horrible i lay there awake, which freaked me out. and ive never experienced anything like it, hearing it and feeling it.

i just wondered if anyone else feels like i do. i feel guilty for being depressed about it all as there are some of you guys that have things a lot worse than i do, and i should be happy at the fact that im still here in the first place!

dont get me wrong im uber proud of my scars and all but i just cant really digest it all at the mo’ (please excuse the possible pun there)

i do believe its depression but i just dont know.

love to you all Alice x

Changing my address?

2011-05-04T17:53:26Z

Hi, we have recently moved and would like to get the TOFS newletter redirected to my new address. I am normally quite good with websites etc but have failed miserably to change my address. I need it changed so then I can make a donation so that my details match up.

Thanks in advance!!

Article on our daughter’s op for EA Long Gap type A

2012-05-14T09:36:50Z

Hi Fellow parents,

I am not sure if anyone might be interested but here is an article I wrote on my daughter’s EA long gap story (so far).

http://www.chatelaine.com/en/article/37080—my-daughter-was-born-without-an-esophagus-a-father-s-terrifying-journey

I can only apologise for the magaizine’s sensationalist “my daughter was born without an Esophagus” headline. The media cant help themselves. I have demanded they amend this ...but anyway ...the story is as I wrote it.

There is not a day when i do not think of other parents and their children struggling with more complicated problems than ours…or those waiting to see what happens.

Best wshes

Rowan

physical tiredness

2012-05-14T08:58:52Z

Hi,
Just wondering if anyone else’s tofs get brethless / loud breathing / wheezing when they run around playing.
If so, do you try and stop them running around with their friends or do you just let them do what they can?
Jayne x

Anyone else have one twin with TOF and the other not?

2008-03-03T22:09:02Z

Hi I’m new to the world of twins and TOF and wondered if anyone else has been in the same situation?

Had twin boys by c-section on 1st Feb but within an hour or so had one of the twins whisked away because of breathing difficulties.Just thought he needed his lungs clearing out because of the c-section and that he would be back with me shortly. So it came as a bit of a shock when the dr said Luke needed a major operation as his windpipe & foodpipe were joined up - that the best place to have that done was Leicester & that Luke would be transferred there asap. So I only had a few minutes with Luke that first day and didn’t get to hold him properly until a week later when he was out of neo natal care & in high dependency. He has been in so many different wards now and still hasn’t been home that I’m beginning to wonder if he really is my child! Everything seems to be a blur and I find it hard -wanting to have some normality at home with his brother Joshua to counterbalance the stress of dealing with so many different nurses looking after Luke & not really knowing what’s going on & what’s holding Luke back.

Fay

Chest infection

2012-05-05T01:56:56Z

Codi was rushed hosp in an ambulance yday as his chest was sinking in at rib cage so was sent straight recuss after few hours was sent to ward on oxygen and nebulisers he stabilised by night time and my peadatrition sent me home with inhalers my question is he is so bunged up with mucus and chesty what can I do to help him and do u lot stay at home or in hosp when they have chest infections should he be on antibiotics as they said no bcz it viral they won’t help

Tof noises

2012-05-01T22:11:32Z

Hi there I am new to this site my son codi was born 7 weeks early and had type c tof. I have recently started weaning him and he has had 2 dialations one which was last week and since then he has started making a really loud noise sounds like a donkey is this normal also any advice would be appreciated codi is now 24 weeks and over 16lbs

Grumpy cryin tof baby

2012-05-01T22:34:22Z

My son codi is 25 weeks old and for the past week or so since his stretch he has been crying almost all day and been very grumpy he is normally quite a grumpy baby and wondered if this was common with tof baby’s he gets very angry and hits out with his fists and hits himself with his hands