Today I took Ginger to see the cleft surgeon for follow-up after her surgery. All very pleased, the lip is healing well.

Then we talked about scheduling the surgery for her palate. The surgeon said ‘the primary reason for this surgery is for her speech’. I said ‘well, and hopefully her feeding too.’ At which point the surgeon said ‘well, feeding and swallowing difficulties are usually caused by other factors, it’s unusual for surgery to the palate to make much difference if a child has problems with their swallow.’

Which left me somewhat surprised and considerably cheesed off. Looking back, I am not sure that anyone has ever explicitly said to us ‘Ginger’s feeding problems are caused by her cleft palate. When that has been corrected, we can hopefully start to give her some food orally and see how she copes with that.’ However, it has always been my understanding that Ginger’s unsafe swallow and her cleft palate are connected – I’m sure that’s how it was presented when we were first told she couldn’t safely feed orally and we would have to learn to feed with the NG tube, back when she was just a couple of weeks old. Certainly, since then, whenever I have mentioned to medical people that after Ginger’s surgery on her palate, we would start attempting oral feeding they have made agreeing ‘yes absolutely’ type noises.

So today it feels as if we have been told she may never feed orally (despite, now I think of it, the feeding clinic consultant saying he felt her outlook for feeding orally was good), and that she’ll always be enterally fed.

If food was only about nutrition, this wouldn’t be a problem. But it’s not. It’s one of life’s greatest pleasures. Eating together is how we build relationships and community. Going out for a meal on a date; a pub lunch on a friday with work; communion; family meals.

Not very impressed this evening.

(In case I don’t pop in again beforehand – just to let you know she’s going in again two weeks today for surgery to place her feeding tube directly into her stomach through the abdominal wall. Which at least means No More NG Tube. Which is A Very Good Thing Indeed. As long as the cough she is currently brewing doesn’t come to anything.)

10 thoughts on “ack.

  1. Probably not allowed to say what I want to say, but we’re praying for your peace and Annie’s eventual enjoyment of food!
    Lots of love xxx

  2. That’s a tough piece of news to receive. Hoping for a satisfactory way forward for you all. Trusting the next op is a success.

  3. I am so sorry to hear the potentially bad news… but we’ll keep praying to the God of miracles… and wait for the doctors to be proved wrong!

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