TOF/OA story.

Sophie was born with a Tracheoesophageal fistula and oesophageal atresia.

To view detailed blog entries click here for part one, here for part two and here for part 3.

This was corrected at 36 hours of age via a major operation, which left her on a ventilator for a further 36 hours. Once awake and battling sepsis, we began the task of establishing oral feeding. She had a tube called a TAT stitched into her foodpipe which is similar to an NG tube while her repair healed.

After 3 weeks, she did begin to take more milk orally than via the tube. At this time, we were told that Sophie had cystic fibrosis which was discovered via the guthrie test.
After 4 weeks, sophie had the tube removed and we came home. After a week, she began to develop chesty symptoms but on examination her chest was clear. What had happened to cause the chesty sound? I had a battle to get her doctors to take us seriously and I was so scared to feed her as that magnified the noise. I thought I was drowning my child. Unknown to me I was!

We were transferred back to her TOF hospital and they diagnosed a stricture. Where they had repaired Sophies oesophagus, the join known as the anastomosis had become inflammed and her oesophagus had completely closed. This meant any milk she took would either come back up out of her mouth or go down into her lung.

Sophie had her oesophagus stretched known as a dilatation and she began to feed 'normally' again and we were sent home thinking this was the end.

Little did we know....

Sophies oesophagus closed again after being home for 2 weeks. This time things were slightly different. Leading up to the full closure, she began to get really unhappy after milk feeds, drawing her knees to her stomach, crying, fidgeting. Colic we were told so we went into colic treatment mode. I have to say, nothing helped. She also wouldn't take as much milk per feed.

When back at the hospital, they again diagnosed a stricture and performed a dilatation.
Afterwards at home things were very different. She would vomit after every feed, i'm talking full projectile vomit not little spit ups. It was like a scene from the exorcist. Consequently her intake of milk got less and less until she was only taking about 80 mls of milk per feed (She was taking 160-180 mls).

Again the chesty sounds returned and we were back at the hospital. Unfortunately her surgeon was off so we had to make do with junior doctors to treat her. The third dilatation was performed. This time we stayed in for a little while to try and get to the bottom of what was going on. I suggested reflux to the team but they were reluctant to do anything until her surgeon was back. Sophie was already taking ranitidine, domperidone. gaviscon and omeprazole.

Home we were sent and cue the chesty sounds appearing again after about a month this time. Anyone see a pattern forming here?

Back to the hospital we go.

Dilatation number 4 is performed and Sophie will only take approximately 20 mls of milk per feed. My husband and I point blank refuse to take Sophie home like this as she was losing weight and very very unsettled.
Again her surgeon was off and finally a ward sister listened to us and fought with the doctors to pass an NG tube so we could get some nutrition into our shrinking child.

Eventually we were sent home but by this time, Sophie was taking less than 10 mls of milk orally and vomitting all the time, even inbetween feeds. Her surgeon phoned us up at home as he had seen that we had been in twice while he was off work. As soon as he heard how little milk she was taking we were advised to bring her straight into hospital for tests....

Once back at the hospital Sophie was trialled on an array of milks, infatrini, paediasure and others which I cant remember now.
All made her vomitting worse so she was eventually put on neocate milk. This was created for astronauts as it is absorbed higher up in the digestion tract and doesn't sit in the stomach for long. We saw a slight improvement withthe vomitting but she was still really unsettled and at this point would not take any milk orally. She also couldn't tolerate a dummy in her mouth, this would make her gag and then be sick. Infact, even if she put her fingers in her mouth she would be sick. She was now oral phobic (oral aversion).

A Ph study was ordered. This is where a tube is passed up the nose and down into the stomach (just like an ng tube) and is left in place for 24 hours and it records data into a small computer. It shows how much acid is present and whether it is backflowing up the oesophagus (reflux). Sophies results were normal? Noone actually believed this so a barium swallow test was ordered. This is where dye is swallowed to see how the stomach acid reacts to it.

As soon as the dye was squirted into Sophies mouth, swallowed and hit her stomach, it shot back out and up her oesophagus about 3/4 of the way up. We finally got a diagnosis. She had severe reflux.

As a consequence of her TOF, her stomach muscles hadn't developed properly at the opening of her stomach (fundus) so therefore, she had no muscles to tighten when milk entered her stomach and it was this that was causing the severe reflux.

The only option we had was for Sophie to have an operation called a nissen fundoplication. The surgeons would take a small flap from her stomach and wrap it around her oesophagus and stitch it back down. As she breathed in and her diaphragm lifted up it would pull the sling tight and act like a sling. This would create enough tension to tighten the opening to her stomach and keep all stomach contents where they were supposed to be.

The op was a sucess, as a side effect, Sophie can never be sick again. She can try to be but nothing can get out of her stomach.

Unfortunatly though, it didnt cure her oral phobia as the damage had been done. She associated anything going into her mouth as causing pain and we have had a very long battle (which we still haven't won) to de-sensitise her mouth so she could put her fingers in without gagging and use toys etc to teethe.

At 5 months of age, she didn't even weigh 12 lbs. Once the operation was completed and she had healed, the weight piled on. We continued to NG feed for a further 12 months and then she had a PEG tube inserted into her stomach. This has recently been changed to a Mic-key button.

Sophie is now 3 years old and will happily clean her teeth, will put a few spoonfuls of a variety of foods into her mouth and is also taking small sips of drink.
It's a very slow process and once damage is done, there is no quick cure to get your child to eat.

The main problems we have experienced is everyone appears to be an expert on how to get a child with feeding problems to eat. This is very often not the case. We had so many professionals involved we didn't know who to listen to.

Eventually we met the right professional and it is thanks to her, Sophie has made so much progress and is coming on leaps and bounds.

1 comment:

  1. Hi Gemma

    I am so happy to hear about (your)sophie and her triumphs.
    I too was born with TOF/OA and I am now 15yrs old, happy, healthy and fit as a fiddle, playing sport and eating almost everything.
    Best Wishes for you and Sophie



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