Hi to you all,

Just wondering whether anyone can help or give more some info. Our daughter Lauren is 4 years old and was born with TOF/OA at 32 weeks gestation weighing 1.5kg. She had surgery the following day and other than feeding issues and ventilation she recovered well and came home after 3 months. She has had one dilatation only 2 weeks post op and has one further stay in hospital aged 6 months for a collapsed lung following reflux aspiration.

Eating wise she eats everything put in front of her although I notice she takes longer to eat than her sister who is 2, but rarely has problems with choking issues….touch wood.

The one problem she does however have is recurrent chest infections and is always on antibiotics and has had 6 courses of oral steriods in the last 4 months. She has been on Losec and Motillium for reflux for about a year and after an endoscopy on Friday it seems that this is still causing her to have severe oesophagitis. A ph study shows that for 65% of the time the pH is below 4. The doctors are saying that we are heading to the Fundoplication route which immediatley sends me into panic mode, just wondering whether anyone knows of any other treatment for reflux or whether anyone has a child who has had this surgery and what is the outcome.

Thanks so much.

Annelouise

Hi Annelouise
my name is Sarah, I’m 19 and I was born with TOF. When reading your post I saw a lot of similarity’s between Lauren’s experiences and my own, and I wanted to help with information.

When I was 3 I had a Nissens Fundoplication. I can’t really remember it but my mum tells me that she was terrified (naturally), however, it went perfectly and I have never had any major problems since. I’ve had many dilatations since but other than that I’ve lead a perfectly normal life. I do have a rather impressive scar but I know that they can now do that particular surgery in key hole.

Where eating slowly is concerned I still do that now! I’m always the last to finish a meal as I have 2 chew it thoroughly, but it’s better 2 be safe then sorry!

I also had a problem with chest infections and it seemed like I constantly had one! However, it seems that I’ve grown out of them and (touch wood) I haven’t had one for a few years.

I hope that this may have helped and if I can help any further with questions you may have I will be more than happy to help you in whatever way I can. If you do have any questions at all please email me (email address shown below)and I will try to help as best I can.

My thoughts are with you, and even though I’m sure it will be, I hope that every thing will be fine in the mean time

Sarah

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