Hi,

Just wondering if anyone has exzperienced an oesophageal perforation during a dilatation?

What was your length of time in hospital?

How old was your child?

How soon after did your child have another dilatation?

Did it perforate again?/ Is it likely tomdo so?

I posted a thread in the general forum but didn’t get to hear of any experiences of others,Daisy had 3rd dilatation at 8weeks old, oesophagus perforated, still in hospital now- 5 weeks on :-(

Your stories will be greatly appreciated xx

Sadly Amy had an operation at 6 months old to stretch it and it did go wrong. Amy was then given milk as no one had said it went wrong. She was in intensive care for 6 weeks and only spent 1 night on children ward cas we were traving every day to see Amy.
At the time in hopsital Amy had her lungs removed so the abecess off the milk could be removed… number of x rays with the liquid and a line put in to her jaguar vein in her neck.. Amy was very poorly and they was a few times when they thought she would not surviour.
I know what you are going though and how you just want your child home safe and well. She has had no more stretchs since. We were offered a camera to go down but we refused this.. our view is if she having no problems then why may-be cause a problem. but that is only a personal view.
If they any support I can give you let me know.

Hi there happy Jo,

Sorry for the delay in replying to you. Sorry to hear about Amy’s experience with the perforation. When was that? How is she now? has she had another stretch since? Were you nervous?
Daisy has been discharged this week on Mon 2nd March 09 after 5 and half weeks recovery. She is now NG tube fed as she seems to have lost the ability to breastfeed or even take a bottle. She is 14 weeks now.

Amy’s story sounds horrific! Sory to sound thick but how did they remove the lungs? or was it part of the lung or what?

\It is just awful I know- oesophageal perforations are not meant to happen all to often. My surgeon won’t touch Daisy now for at least months- the NG tube is acting like a spling to keep her OS open.

Hope you are well

Thanks again for getting in touch xx

Hi
Amy has not anything done to her since, but that is because it is our choice, we think she has been though enough and if she doing ok, why risk anything else going wrong.
I not sure how they removed her lungs, it was done in an operaton and they exmaine they can not put them back in the excatly place, they be slightly out of postion. They did 1 lung one day and then the next day the next lung was done. To be honest it all very hard to remember cas it was such a awful experience I sort of block out what when on. When the doctors etc.. ask me questions about Amy at that age and how quick she recovered. I really can not remember… maybe this is cause by all the stress that I went though. I never want to do that again, and hopefully won’t have to. It is amazing how you adapt and just get on with it all and cope. It was harder cas I have two older children and it was trying to sort child care etc out for them, as we did not want them to see their sister so poorly.
Amy is not too bad, she has bad balance problems, falls over a lot, had problems with a lot of food and needs to chew things really well. She is learning what she can eat and cannot eat. She is double jointed in her feet, ankles, knees, wrists, elbows, arms and hips. She also shouts a lot, she does not seem to be able to talk quietly. I dont know if theis is some connected with her thoart, cas ur ear, thoart and nose all work together.
Amy starting school in September and I terrifly. At the moment I trying to get supervision at meal times at school, as I not willing to leave Amy with the two dinner ladies in a hall full of children.
It has took me 3 years before I could talk about what Amy went though. I do not think it goes wrong very often and I wish no parent goes though, what we went though.
Hope your little girl recovers well. Let me know Joanne