Hi all,

My son was born at 29 weeks weighing over 1000 grams. The day after we were told he has to undergo the TOF surgery. The earth shook beneath my feet! The op will be done once he puts on more weight in a couple of months’ time. He is 2 weeks old now and nestling safely in an incubator (which looks more like an electical womb!)

I’ve been reading up a lot about TOF and feel better informed now. Thanks to TOFS.

Hi and welcome to the forum. Congratulations on the arrival of your son. Does he have a name? Is he your first baby? My daughter Eva (now aged 4) was born 5 weeks early and had her surgery at 2 days old. If you want to ask any questions please fire away, everyone on here is really friendly and helpful and we have all had different experiences. All TOF children are different. Which hospital is he in? Eva had her surgery in Leicester as we were transferred but all her aftercare is at Addenbrookes in Cambridge.
Good luck and please let us know how he is getting on!!! And how your coping!
claire x

My grandson was born at 29 weeks too - it was a very worrying time and I can understand how you feel…............

He was diagnosed as a tof baby within 12 hours of his birth and also had to have an operation.

The information and support we received from TOFS has been wonderful - I am so pleased you have joined, I’m sure you will be reassured by it.

He is now almost 3 years old and a very bright and happy little man

GranJo

Welcome to TOFS! My son (an identical twin) was only 4 weeks early, but he was very tiny, only 3lbs 6oz or 1.54kg. He was big enough for surgery at 2 days old tho, and is now happily driving me bonkers like any other five year old!! We are in Huddersfield but went to Leeds for op. Where are you?

Hi, congratulations on the birth of your baby. Its such a shock isn’t it, you must feel like your world has fallen apart but you will come out of it the other side. Your baby’s strength, courage and determination will amaze you everyday. My daughter is 5 now and is doing well. This forum is fab, always great advice and support. Ask any questions that you have. Be strong, there will be some really difficult times and when your baby is in hospital it is really hard but you will get through it. Let us know how you and baby get on.
Good luck!! xx
Lisa and Maisie xx

hi, welcome to tofs. i cant speak highly enough of this website, iv had so much help, support and advice from here that has really made a difference to us

my son hugo was born at week 26+6 weighing 2lbs. he too had to wait 3 months for his join as he was such a large gap. we didnt know he was a tof either until he was diagnosed the day after birth. its such a nightmare at the beginning, but you get through it, i promise you.

ask any questions you have or just use this forum to vent any feeling your having, weve all either been there or going through the exact same thing, and it helps so much to be able to talk about it with people who know exactly what your going through.

please keep us updated on how your little one gets on

kim xx

I’m really glad to receive all your kind messages. Many thanks for all your support - hugos_mummy, Lisa, Claire, Twin Mom and GranJo. My son is called Balaji and he is presently in NICU (St Mary’s Hospital in Manchester). He is our first and only child. We live in Manchester. I hope the doctors will work their magic, especially Mr Bowen - senior surgeon.

One of the consultants suggested it could be a 2cm gap between his disjointed food pipe. I have no idea how small or big that gap is. It’s now a waiting game until he reaches full term in the first week of April 2012 and also put on some weight.

Will keep you all posted.

Keep smiling

Many many congratulations!  I’m Sioned…my daughter Begw, now 3 and a half, is an Alderhay baby, and had her repair done the day after she was born.  We live in North Wales.  St Marys is a brilliant hospital, you’re in safe hands.  Just wanted to say that I come to Manchester a lot with work, so if you fancy meeting up just give me a shout.  I remember when Begw was born wishing I could talk to someone about TOFS, I’d never ever heard of it before.  It was a good 3 months before I found this forum, and since then, I’ve never looked back.  Take care…everything will be fine….Sx

Hi,

I’m after the book - “The TOF Child”. Can I buy it from anybody who has an extra copy or a used one? Please get back to me if you have one.

Thanks,

Vinay

have you asked diane at the office if they have any copies?
jayne x

Thanks, Jayne. Will speak to Diane.