Any other TOF babies?

[Valbonne09]

Been diagnosed with polyhydramnios (currently 30 weeks measuring 37) with largest pool at last weeks scan at 11cm. Cervix long and healthy so far. GTT normal. Due to concern at 20 week scan and increasing polyhydramnios since diagnosis at week 28 consultant and sonographer are diagnosing baby with a TOF (tracheal-oesophageal fistula ie joining between windpipe and foodpipe). They can't be 100% certain until baby is born and tested but this is what we are preparing for.

Have been signed off and am trying to keep baby inside until at least 32 weeks at which point it is likely they will drain a couple of litres which they said they would do now except of increased risk of inducing labour.

Unlikely to go full term so setting mini goals of 32 weeks, then 34 etc etc. Quite likely that they will either induce me or do a c-section so that bed at Great Ormond St is ready for baby and surgical team ready.

Has anyone else had experience of this? How did it effect your birth, baby, bonding etc etc??

Hi,

I've just finished a long journey with this myself and to be honest not sure where to start but I'll do my best to add helpful info. I can tell you my tale and maybe you can ask any questions I may be able to help with.

I was diagnosed with severe poly at 25 weeks which continued to increase until my son was born at 34 weeks. The largest pool I had was 14cm with an AFI of 48. I had two procedures to remove fluid in order to ease discomfort as well as pressure on the baby/placenta/cord. I also had steroids for babys lungs at 30 weeks.

I was under the care of a fetal medicine consultant but for us they thought TOF was unlikely as they could see the baby swallowing and peeing and so we had many, many tests for other reasons for the poly such as downs, CF, infections such as toxoplasmosis but in the end no cause was found.

The care plan was to monitor closely for signs of early labour or that the pregnancy was compromised. Eventually for us the latter was the case and I had a c-section at 34 weeks due to the cord no longer functioning properly under the pressure of the fluid.
Because of the excess poly our baby was transverse (apparently common due to floating around in such a big pool) and so I could not be induced.

Our baby was born with some kidney issues which are likely to be the cause of my polyhydramnious.

It was a very scary time but we were looked after wonderfully and I'm very thankful for the close monitoring we had as well as the aftercare in NICU.

There is so much more I could say but want to keep it to what is relevant and useful for you, I do know that I struggled to find information on severe cases so do feel free to ask any questions.

best wishes

Have a look on Facebook as I think someone recently set up a group/page for this (one of my FB friends has a son with this condition). Hope you find the info/support you need x

Hi there, my experience is a little bit out of date but I am a TOF/OA baby. I'm 34 now, when I was born it was obviously pre scanning so my mum and dad had no forewarning. I was operated on at 12 hours old.

There is a TOF support group www.tofs.org.uk/
which might have some useful information.

I hope you find the information and support you need. Feel free to ask any questions.

Thanks all. Had a good scan last week where the fluid levels stabilised rather than increased. Keeping my fingers crossed that it all turns out to be nothing but really reassuring to hear from you all, thank you.

We're 32 weeks on Monday which was our first milestone to reach so am very pleased with that. Fingers crossed this weeks scan is also stable :)