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Lets talk about TOF, baby!

Posted Sep 14 2010 7:01am
Part one: The birth.

I have noticed that a number of people are checking out my 'What is TOF/OA page?' and after re-reading it, it confused the life out of me so thought I would do a blog about it and try and explain it a little better. It was and is a HUGE part of Sophie's day to day battles along side her CF.

Rewind back to me being 30 weeks pregnant.

Huge you'd imagine?

Wrong! I was still in my UK size 10 jeans with the teeniest tiny baby bump ever.

Give it another 2 weeks and my bump EXPLODED to the point that there was no give at all, my tummy was rock hard and ready to burst!

I visited a specialist whom I was under due to a latex allergy and she happened to comment on my size (way to make a girl feel beautiful ;) ). She had a feel of my stomach and told me one of two things.

1) I was going to give birth to an elephant.
2) I was full to the brim with amniotic fluid and needed further investigations for gestational diabetes and an ultrasound to rule out other 'problems'.

All the tests were ordered and I was booked in for my scan. I was negative to gestational diabetes. I had to wait a week or so for my scan and never made it...

At 35 weeks my waters broke in spectacular fashion and contractions started so off to hospital we toddled.

After 4 hours the contractions stopped, I was scanned and no abnormalities detected. I was also given a steroid injection to mature the babies lungs as she wasn't going to make it to term now my fore waters had gone.

I was kept in for 48 hours and nothing, so begged to go home.

The following morning I woke up vomiting at home, so had to go back to hospital but no need to rush. On the way I had some lower abdo discomfort but no contractions.

Arrived at the delivery suite happily joking with my mum as Ian had gone with his dad to watch a football game (I told him to go)but knew he knew I was going in to get checked over.

I was examined at approx 3.15pm, 2 cm dilated and no sign of a contraction.

The midwife thought I wasn't in labour and neither did I but we had to wait for a consultant to see me.

At 5.00pm Ian arrived from the game, he left at half time as he had a 'feeling' he needed to come. By this point I still had lower abdo pain but was walking around with no contractions.

At 5.30pm I suddenly was unable to walk, assisted onto the bed and examined.
I was 10 cm dilated!

At 6.20pm Sophie had arrived surfing on a wave of amniotic fluid weighing in at 4lb 13oz (2.25kg)

That quick! I recommend this kind of labour!! But the poor midwife didn't know what had hit her.

I attempted to feed Sophie but she sounded like she was choking on her milk so they wanted a doctor to look her over in PICU as there had been so much amniotic fluid.

I had a quick shower, stripped my bed (nurse in me!) and we packed up and moved to the intensive care unit where we tried to feed Sophie again.

This time she went blue, her sats dropped and she was frothing at the mouth. She was suctioned and they explained that they would try and pass an ng tube over night to get some feed into Sophie as she had had nothing since birth.

Ian was sent home, and I returned to the ward.

The following morning I had woken needing to express milk so once I had done so, I told the midwife I was going up to PICU, she said that a doctor needed to speak to me and would probably be there to meet me.

I had the LONGEST walk in history, my heart was pounding, I felt sick.

What was going on?
Was she okay?
What had they found?
Was she still alive?

The doctor did meet me at the door and took me into Sophie. No ng tube, however she did have a small tube in her mouth draining out her secretions and some IV fluids running.

He explained that they had tried to pass an ng tube unsuccessfully and when they had xrayed her, it had met a dead end and had looped back upwards and came back out of her mouth. He showed me the xray and I saw it for my own eyes.

He then explained that they thought she had a tracheo oesophageal fistula, and they were currently contacting the four hospitals in the country that could perform the life saving surgery she urgently needed to see which had an available bed for her.
An hour later Ian had arrived and I explained everything to him.

The doctor did give us some detail but to be honest I only took on board some of the information, as I felt like I was watching something that was happening to someone else.

It wasn't happening to us, it wasn't to do with our newborn tiny baby, he wasn't telling us that without the operation she would die, and there was a possibility she may not even survive the surgery.


A bed was found in Leicester and when the ambulance arrived with a neonatal nurse and the most high tech incubator I have ever seen, she was blue lighted 40 miles away and we followed in our car.

Unsure of what was going to happen, if she would survive, heartbroken our new precious baby had a fight on her hands.





To be continued...
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