What was… really more awkward was the questions from people. I had no idea that it was a normal question to ask: people in the street, you know, neighbours would ask whether I was breastfeeding [laughs] and I kind of, I used to be really surprised at every single time somebody asked me whether I was breastfeeding. And, you know, it had never occurred to me to ask somebody who had just had a baby how they were feeding it [laughs]. And that was quite tough. And actually at that stage I didn’t want to go into the ins and outs; we kept it very private at first about Martha’s palate.

Yeah.

And I didn’t want for it to turn into a… discussion topic for a street corner chat.

No.

And so I always used to just say, yes, I was breastfeeding.

OK that’s interesting, yeah.

Yeah, you know, just kind of side-stepped the question completely.

Right so, yeah, it’s kind of

Yeah [laughs].

That’s a kind of interesting statement.

Yeah, yeah I just, I wasn’t ready to go into it with other people. And I still, you know, now when I think about those early days, I still find it really upsetting, because it was a difficult time.

But certainly I wasn’t ready then to speak to people about it that I didn’t know particularly well. And, you know, it, it was… it was a really anxious time for us until things kind of settled down and we got into the groove, so yeah.

So, yeah, from when she was four days old she was diagnosed, and from birth shed really struggled with breastfeeding.

Yeah.

And I’d kind of thought it was because I was doing something wrong, or it was something to do with technique. She… was really having trouble latching.

Right.

And when she did manage to get some milk it was coming down her nose, she was restless in-between feeds, and she was tiring really quickly, and we know now that all of those things combined are key indicators of a problem. But we had no idea, we just, we were… brand new parents and didn’t really know what to expect in those early days, so had no idea that it was all pointing towards a cleft palate.

OK and had you any prior experience of a cleft palate in your family?

Not at all, not in the family.

No OK.

Weve got a friend who had cleft lip and palate, but it was just… not something that really we talked about.

Something you hadn’t really considered, yeah?

Yeah it just hadn’t occurred to us that wed ever come up against it. And definitely, you know, there was, there was no family history. So it just, it hadn’t even factored.

Sure OK, so who was it who made you aware that it was a cleft palate in the first instance?

It was a nurse. So Martha also had reflux when she was born. And the reflux combined with the cleft was making her quite uncomfortable. She was having some choking episodes. And it was when we took her back into hospital to be examined by a consultant she had one of these choking episodes as the consultant was examining her, and he admitted her back into Special Care Baby Unit.

Right.

And as we went through there the nurse who was taking an MRSA swab noticed that the swab was going too far back into her mouth, and she kind of pretty much said straight away that shed found out what the problem was and

Right.

that Martha had a cleft palate.

And this type of cleft palate, is it what they describe as a submucous one?

No it’s not.

Oh it’s not, OK.

So a submucous one would be covered by the membranes, as I understand it, at the back of the mouth. The soft palate, you can really clearly see the uvula at the back of the mouth. It’s usually just one dangly bit: in a child with a soft cleft palate they’ve got… it kind of splits into two.

OK that’s fine, yeah. OK so on hearing that news, what did you do next? What kind of support and help was available?

In the short-term, the very short-term, there wasn’t much support available. We were given a ring binder with a few diagrams in, but the special care nurses weren’t that knowledgeable about the subject, didn’t seem able to tell us anything about what was ahead of us, and what the treatment options were.

OK.

And I was kind of left wondering whether Martha was ill, and whether it was something that was going to, you know, make her sick, didn’t really understand that actually there was, you know, there was a whole team of people who were going to take care of her, and it could all be fixed with one operation.

I was asked by a midwife about whether I was going to breastfeed. You know, she kind of looked at me after I’d explained everything to her, and shown her a squeezy bottle, and explained what was going to happen over the next few months, and how the muscles in the mouth were formed and… and she still looked at me and at the end of that she kind of said, Oh so you’re not going to try and breastfeed at all? And I just thought, I’m… I’m not sure that you’ve listened to a word that I’ve said. And, you know, these people are there to hold peoples hands through a really uncertain time anyway, but when they’re putting pressure onto somebody to do something that’s physically impossible [laughs] it’s pretty, you know, it’s not ideal really.