Esophageal Atresia (SP)

[BettyBoop152]

Hi Ladies..
Wasn't sure where to post this but I'm guessing this is the place..
So at 20 weeks we were told our bubba had a smaller than normal stomach.. in fact so small it wasn't visible on the scan.. so since then we have had lots and lots of scans only to confirm that there is an issue with bubs. . This was marked as ? TOFS esophageal Atresia.. this means bubs will be taken at birth and tested on.. so I guess my question is has anyone else been through this.. how long was bubs away for.. how did surgery go and how long did you stay in hospital.. xxx thanks in advance xxx

 

[maisiemoo]

Hi, my daughter was born with TOF's - tracheo oesophageal fistula and atresia. First if all, I would recommend that you visit the TOF charity website, they have loads of information and links to support groups within your area.

TOF affects each child very differently and my daughter spent just two weeks in hospital following her surgery, and that's despite being born prematurely. Olivia did require a number of dilatation's after her surgery however has not had any problems since. She eats better than the average child and at nearly three, TOF doesn't affect her at all. The mums I connected with when Olivia was born and who are about the same age now, are also doing very well.

If you have any questions, please feel free to PM. The diagnosis must be a real shock and really frightening right now. What information have you been given so far? I know it's easier said than done, but try not to worry now and be assured that once born, I can guarantee the care he will receive will be phenomenal - TOF research has come so far and the outlook for even the most complicated of cases is good.

Helen xx

 

[BettyBoop152]

Thank you so much for responding I was beginning to think I was alone!
I haven't been given much information so I will have a look at the website you have suggested..
I am due to see a consultant tomorrow so I'm hoping I will know more but apparently they can't give a definite answer until the tests are done at birth.. can I just ask how invasive is the surgery and how long are they away from you for? Xx

 

[maisiemoo]

Bless you - you are definitely not alone. It's dependent on the extent of the fistula. My daughter had the fistula and a short gap (the website will have diagrams of the difference). The surgery is typically an incersian via the back, Olivia's around the right shoulder blade (on the bra line) and her scar is about 2/3 inches long. The surgery took around 8 hours and she spent a few days in picu (paediatric intensive care unit). It is major surgery, but they do it very neatly and sensitively.

Babes will be the tube fed for a period of time until the scar tissue on the oesophagus has formed. I was even able to breastfeed Olivia once they were happy for her to try oral feeds, taking around 2 weeks post op. If my memory serves me correctly, we were told that most TOF children born full term are often discharged 2-3 weeks after surgery, which is amazing considering what they've been through!

Unfortunately, they can't tell you much about the TOF until the baby is born. So avoid reading everything on the site as you will worry yourself and much it may not be relevant to your baby's condition - it wasn't for Olivia. The main concerns following the surgery is a TOF's ability to handle oral feeds, typically around weaning. I just want to assure you that many TOF's are also fine in this area.

 

[BettyBoop152]

I'm so glad you posted that about not reading too much into the site until baby is properly diagnosed as I have had a look and panicked quite a bit...
I'm not sure how DD1 is going to handle me being away for a long time but I guess it just has to be done! I'm lucky to have a great support from family and close friends so I will use this to help out..

Thanks again for your response I will PM you once bubs is here and let you know the outcome xxx

 

[maisiemoo]

Yes, I did exactly the same. We were given the sites book "the TOF child" and can say that 90% wasn't applicable, it did a good job scaring me though. It's good to hear that you have a support network in place. Hopefully your daughter will be ok with being left and in the grand scheme of things, it should only be for a short period of time.

Wishing you all the best and hope everything goes smoothly. Do pm afterwards

Xxxx

 

[BettyBoop152]

Just wanted to let you know our baby boy arrived yesterday safe and sound and has no issues to report.. his stomach is a lot smaller than the average and he is a very fussy feeder but mechanically all is as should be.. massive relief and thank you so much for your time when posting.. all the best for the future with your little lady xxx

 

[maisiemoo]

That is fantastic news! Congratulations xx