My name is Jody (27), I’m married to Dan (33) and we have 3 healthy sons (5),(3), (20mnths) and have just had our long awaited daughter on 23rd Nov 08- Daisy Blossom xx We live in Rochdale in Greater Manchester.

We were unaware of any problems wth Daisy and took it for granted she’d be healthy as her brothers were. I was induced due to SPD at 38 weeks and after a rapid delivery gave birth to 7lb 6oz Daisy. She was mucusy and required suction but still nobody knew… Only when I breastfed her and she went blue she was transfered to special care for tests.

After suspected TOF/OA Daisy was transfered to a more specialised hospital (st Mary’s, Manchetser)who confirmed her diagnosis. We were absolutely devestated and struggled to take in the news. Daisy was 4 days old when they performed the operation. We were lucky that the fistula was sorted and the upper pouch of the oesophagus was extremely long (very rare apparantly??). The surgeons managed to join the 2 ends although the lower pouch was very poor quality muscle and very under developed and narrow :-( At the end of her operation they attemtped to pass a tube through the join but it was too tight so they had to repeat the procedure and thankfully her upper pouch was so long, however her stomach was pulled up slightly.

Daisy made a remarkable recovery and soon beagn haveing my EBM via a tube.. eventually leading to oral feeds of EBM and actuall breatfeeding her (amazing! never thought i’d get there). She was discharged at 17 days old.

She had only been home for 1 week when she started showing signs of stricture.It was confirmed on our arrival to another specialised hospital in Pendlebury that she had in fact structred to almost closure. She had her 1st dilitation and had another 3 day stay in hospital. Her Consultant said it was to be expected as her join was very tight and narrow.A further stretch was booked for 4 weeks time but we didn’t make it.

Only 2 weeks after the 1st dilatation we had to call 999 as her mucus had blocked her airways and she was going blue. We were taken to our local A & E and again transfered to Pendlebury where a 2nd lot of dialitation was performed, this time they managed to stretch her with an 8mm balloon instead of a 5mm balloon so that was some progress i hope. Daisy had a reaction to the general anesthetic this time and stopped breathing again a further 7 times. The consultant anethetist said this was because she also has bhroncilitus ( oh great!).

We were discharged on New Years Eve and re admitted (emergancy) on 25th Jan 09 due to another stricture. Daisy had her stretch on 28th Jan but this time in went wrong and unfortunately perforated, after a further 4 lots of surgery, chest drains, blood transfusions, collapsed lungs, pnemonia etc..and 6 long weeks to recover she was dischargd 2nd March 09 with a central line & Ng tube for feeding.

5th May- Daisy’s scheduled stretch and removal of ng tube & central line- all successful- home the day after- next big step for us is weaning…. scary, scary, scary but at least we have the support of the speech therapist & dietician.

Daisy takes omeprezole, domperidone, gaviscon for reflux each day and is on infatrini as she struggles to take large volumes orally.

Thank you in advance for reading this and I hope I don’t sound too much like a drama queen. The whoe thing has knocked my confidence as a parent.I’m always a busy person with many commitments with the kids such as school runs and nursery drop offs, swimming lessons and toddler group so I can’t afford to just curl up into a ball although sometimes I want to.

I have so many questions on my mind all the time and our local health professionals can’t help as most of them have never heard of TOF/OA so my health visitor and G.P aren’t available as I’d like/need them to be. Is it normal to need dialitation so soon after the primary repare? and further dialitations so soon after?

I will stop waffling now. Thank you again for reading.

JodySpice xx