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Mary Y

Age at interview: 46
Brief Outline: Mary’s second son was born with a unilateral cleft lip and palate - he is now 12 years old. Mary’s husband also has a cleft lip and palate.
Background: Mary is a full-time mother and works voluntarily for a cleft charity. She is married with two sons of 15 and 12 years. Mary is White Australian.

More about me...

Mary’s second son was diagnosed with a cleft lip at her 20 week scan and was born with a unilateral cleft lip and palate. Mary’s husband was also born with a cleft lip and palate so they were concerned that their first son might be born with a cleft. However, they did not anticipate that their second child might be born with a cleft and it was a shock for them when the couple were informed of the diagnosis. Within 24 hours the couple contacted the cleft team at their regional centre for cleft services. The cleft centre were able to provide information, reassure the couple, and inform them of how and when he would be treated. They were able to make contact with their local cleft team through the cleft services co-ordinator. Mary’s husband spoke to the coordinator and the couple were further reassured about their son’s care. In the meantime the couple looked on the internet - but the pictures they saw made them feel upset, but after meeting the surgeon who would be operating on their son, they felt reassured and less worried. 

When their son was born Mary was not able to breastfeed him because of his cleft palate. Mary was worried about bonding with her son as he had to be fed with a tube. A midwife tried to show her how to feed her son with special squeezy bottle but this was not wholly successful at first. Later, a lead speech and language therapist came to see Mary with her baby and showed her how to feed him with soft specialised bottles bought from the Cleft Lip and Palate Association (CLAPA), so they did not need to rely on the tube. Mary would express milk to fill the bottles and her husband was also able to get involved with feeding his son. Mary expressed the milk until her son was 5 months old.

Mary and her husband developed a great deal of trust in the cleft team and their son’s surgeon. He underwent his cleft lip repair and palate surgery in his first year of life from which he made a good recovery. However, as an infant their son’s speech was poor and he has received extensive speech therapy to improve his speech. He was also offered further palate surgery when he was four but Mary and her husband were not ready for him to undergo further surgery at this point and the operation was deferred until he was older. Their son’s speech has since improved greatly and as a consequence his confidence has grown. Their son has also received orthodontic treatment and undergone a bone graft to straighten his teeth and improve his bite.

Mary’s son is now 12 years old and enjoys drama, and Mary is confident that he will be able to achieve the things he wants in life. Mary is also a volunteer for a cleft charity supporting cleft services in the developing world, and sits on a panel to provide parents views on cleft related research in the UK.
 
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Mary was concerned about bonding with her son who had a pre-birth diagnosis of cleft lip. When the baby was born Mary’s fears disappeared and she saw him as her beautiful son.

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I think, you know, it did cross my mind, I was thinking, “How will I bond, will I have any problem in bonding with the baby?” I was, I was a bit worried. I thought, you know, “You don’t know, how will I find the cleft? You know, the baby looks very different from other babies,” so I was worried about that. But, you know, after we saw the team, after we’d spoken and looked at the pictures, and we felt assured and we, you know, that’s... when the baby is born, I didn’t see the cleft; I just saw him as my, as, sorry, our baby.

Yeah.

You know, all these worries, all these fears what we had they weren’t there. I saw him as my baby, I saw him as my beautiful baby. He had a, I had a quite reasonable easy labour, so that probably did help. He was born very quickly; I had an easy labour. I went to the hospital, he was two weeks overdue actually.

Oh right.

So I went in to a check-up on a Sunday and he was going to be induced on the Monday, but he was actually born on that when I went to the hospital, on Sunday very quickly. So that was easy labour. And when I saw him, he was just really beautiful, you know, he was: we loved him from the moment we saw him, and [son’s name] that he was a healthy baby that, you know, when they check him out and he said, “There is not any other problem, you know, he’s you know, just a cleft.” And we had very good support at the hospital then you know, they... we had extra there, the labour room, they had on call like obstetrician, paediatrician, everybody was there just in case so we felt the whole time reassured. And the labour was, yeah, was quite, you know, with the support there, with the midwives, they are very, very good, they put us... they even gave us the single room after the baby was born. They said, “Would you like a, you know, single room?” So, yeah, bonding, once he was born there was, you know, there was no issues. 
 
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Mary Y received help with feeding her son from a Speech and Language Therapist.

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The lead speech and language therapist. She came to see us, 24 hours later she said, “Right, I’ve looked at this baby,” she was fantastic. She saw the tube, she said, “Oh no, we don’t need a tube here. We’re going to try to do it together.” And, yeah, and they took the tube out, she was there, and she helped me with that feeding technique, using the bottles, and he was... I managed to learn, and they discharged us. But that was really, really, really… that helped us a lot actually when she came to visit us and help us with the feeding. I think that was, that was another a great help actually. I think, you know, I think it’s different now because you have a clinical nurse specialist, they come and see the baby 24 hours, as soon as the baby is born, isn’t it? Then I think they were a bit different. But she came to see us, and she help us and they, they took the tube out. And I managed to... I managed to express the milk. I was very keen to express the milk.
 
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Mary Y was keen to express milk so her new son could be fed with a bottle and benefit from her breastmilk.

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And I was expressing the milk because I was very, very... I wanted... I didn’t want him to, just because he was a cleft, I didn’t want him to miss out.

Sure.

And I really wanted him to, to breast breastfeed him, so I expressed the milk and I was able to do that. I was that was quite OK. And we used those bottle and he was discharged, and I think the first seven weeks you, seven days sort of after seven days you do really become quite good in feeding so, you know, technique, especially techniques with those Johnson, Johnson Mead Johnson bottles, I used them.

So was this something your husband could get involved with as well, the feeding with the bottles?

He was yeah, yeah he was... he was involved. He was helping with the, you know, with bottles. Because when, I mean it was hard, because expressing the milk, I used the Avent manual breast pump, and that was quite good, but that was quite tiring, you know, by the time you express the milk, you have to feed him, and feeding was taking quite a long time.

Yeah I can understand that.

You know, you had to do it slowly especially, you know, squeeze it gentle, the baby it sucks, you know, it’s a special technique. So it was it was tiring, you know. It... takes longer than, you know, breastfeeding or feeding with a normal baby, so I think it takes longer. He was a bit colic, so by the time you feed him, probably maybe half an hour feeding or whatever, I can’t remember now, by the time you have to wind him because he was, you know, a windy baby, half an hour later you have to start all over again.

Right.

So it is, you know, it could be quite tiring. But it doesn’t last a long time. You do, you learn quite quickly.
 
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Mary explains how her son was fearful of cleft surgery to improve his speech and how a psychologist got involved with the family.

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And I remember when he started, I think probably the first or the second day of school I was waiting for him there and he was he was speaking to the teacher, and the teacher was bending down trying to understand him, and he was repeating himself a few times and she couldn’t understand him. And I went there and I mean I was able to understand him, because you get used to it, isn’t it, the way he speaks. And at that moment I thought, “Right, you know, we need to go back to the team and he will, you know, let’s see, you know, what, what further we need to do.” And, and we did, you know, they, they did his speech and language therapy, you know, they reassess his speech. And they were all day, like the whole team is there when you see them, which is really good because you have a surgeon, you have a psychologist, you have a speech and language therapist. They are all there, so if you have any worries, you know, you can speak to them. You can speak to the psychologist and you can tell them, “You know what, I am really scared about this surgery,” you know, and they, they’re here to support you, they’re to help you. And they did, you know, they said, “How do you feel now about the surgery?” I said, “I’m still scared. [son’s name] is still scared,” you know, because he was 6 you have to tell him that he’s going to have another surgery and he was scared. He said, “I don’t want to have a surgery.” And then the team said, “Well do you want to, do you want to speak a bit more about it?” We saw the psychologist and we went through all his fear, all our fear to put him through.

So you both had input from the psychologist, your son and you and your husband?

Yeah we did. We because he was very, you know, once we decided that he needed to have the surgery, this speech correction surgery, you know, you know, he needs, well he knows about that, so we need to we need to tell him what’s going to happen, and he was scared, I think because he was older, he was nearly 7. And he said, “Oh I don’t want to, mum, you know, I don’t want to, I don’t want to do it. You know, do I have to do it?”

Yeah.

And so we said, “Well let’s call the team. Let’s tell them how you feel. Let’s tell them that we are probably scared too a little bit.” So we called the team, we said, “Well we have a bit of bit of problem: [son’s name] is scared, he is unhappy,” and she said, “Well would you like to see one of our psychologists?” And I said, “Well yeah, well let’s see, you know, if it is going to help.” And we did, we went together and we just discussed about it. She was lovely. She talked to him, we went to the theatre, she arranged for us to go to the theatre, so that he’s better aware what’s going to happen. He had a, he had a needle phobia: he was really scared to have any needles put in. We saw the anaesthetist, he said to him, “Don’t worry, [son’s name] there’s not going to be any needle. We are going to put you to sleep by gas first.”

Yeah.

So that, so that fear, I think all the thing was he was really, really, you know, we were able to deal, and I think that was, you know, that was so important. Like, you know, I think that was maybe about... two weeks before the surgery probably, you know, we saw these.
 
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Mary explains the purpose of the bone graft operation and how wearing braces has helped to straighten her son’s teeth.

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Just going back to the bone graft, what is the primary purpose of the bone graft?

It’s for the tooth to cut through where the cleft was, because there was a gap there, isn’t it?

Oh OK.

So the tooth is there, but it can’t cut through because there is no bone there, because there was a gap there. So they’ve put, they take a small bone out of his hip and insert inside his gum, so that the tooth is cutting through and is, yeah, so that he can have a... it’s the perfect teeth. And they, he has been looked after by the orthodontist regularly, you know, assessing his teeth. He’s... and he wears the braces so, you know, but that he can have perfect teeth. Because now if you look in, if you look in his gum, sort of it’s like a straight line because he’s got this after the bone graft surgery. Like some other, like my husband, he’s, you know, because he didn’t, they didn’t have that techniques…

Yeah.

His teeth, where he had the cleft, they are not, they are quite they’re not straight. It’s sort of inside, so it’s very much... and for the bite, so he can bite properly.

Right yeah.

So it’s…

So it’s partly cosmetic and partly functional, this?

Yes, yeah well it’s very much functional, yes, and also... well I wouldn’t say cosmetic; it’s… function.

Would that be more function then, sorry?

Yeah, yeah more function. It’s yeah probably more function, and so he can have, because otherwise your tooth, if you’re not if you’re not correct in them, they’re not straight, isn’t it? So it can be quite distressing and you know, I mean... children will make fun of you if you have a crooked teeth, isn’t it? And so, yeah, so this is now, he’s under that…

So is he still wearing braces now?

Yes he started that, that’s going to be probably maybe another two, maybe two, two years, maybe they are keeping it two or three years I think. It’s a bit longer process, but he’s... he’s going to have perfect teeth, isn’t it, and he’s going to be…

How does he manage with the braces? You don’t see that many boys wearing braces; you see a lot of young girls wearing braces. And I just wondered how he got on at school with the braces and?

No, no problem.

Yeah.

No, no problem at all; it’s fine, never really worried him. A day off school to visit the team is always a bonus for him so it’s [laughs].
 
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Mary Y explains how she and her husband were encouraged to review their sons’ speech development before deciding to go ahead with further palate surgery.

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We knew that you know, if you have a cleft of the palate you might have a speech impediment or problem. And... he did have he was he was monitored by assessed, assessed regularly by the speech and language therapist. He, he had a regular speech and language therapy but his speech wasn’t very, it wasn’t very good. ...He had quite strong sort of what’s the word? He couldn’t pronounce most of his front sounds; it wasn’t very clear. It was very…

Right, which sounds were those?

Like front sounds, like ‘f’, ‘th’, ‘t’, all the front sounds he couldn’t really pronounce them. So when he was, you know, maybe…

How old was he when he first received speech therapy?

He was actually quite early, very early. We are very, very fortunate actually because we saw his... they started early. ...Oh just after his first surgery for his lip, you know, he saw the speech and language therapist, and they were telling us already to use as you know, how to, how to speak to him as a baby you know, those bubbling sounds. So, you know, you know, I think we are very, very fortunate under [Hospital name] because they did you know, we had a speech therapist very early. As a baby, like after four months we saw we saw them, you know, they were coming here in [place name] yes.

That’s quite early, isn’t it, yeah?

So it was fantastic. But just it wasn’t enough, wasn’t good enough because of his cleft was very wide. And I think when he started maybe when he was about 4, they were assessing him and they were telling us that he will probably need to have another surgery on his palate: I think it’s called a speech correction surgery.

Hmm.

Because his, his speech... delay or impediment was quite severe. But we were able to understand him, because we just got used to it, isn’t it, the way he was speaking. But the team was concerned that he’s going to suffer at school and they wanted him, you know, because speech is so important, isn’t it, so they, you know, they wanted him... they first tried with the speech therapy and then after we talked to them and they said to us that he will probably need to have this this ...this surgery to correct his speech. I think they had to sort of extend his palate because there was a gap. There was too much air coming at the back of his throat you see. The palate wasn’t closing properly so ...too much air was escaping. And he had a special x-ray, I can’t remember now what it’s called, to x-ray his palate, to see how the palate is working.

Oh really? Yeah.

Yeah very, very, very clever machine. I can find it, I think on the, on the, on the website, on the CLAPA [place name] website there is information about this, this special x-ray if you need to know the name. So they x-ray your palate and while he is speaking, I think he was maybe about 4, and they can see that the palate is not working properly, you know, and…

That’s very clever.

Very clever. And he needed to have the surgery. That was…

So he had further surgery at what age?

Well he was... about when he was 4, 4 or 5 when they told us he needed to have. We, I think we weren’t ready for another surgery because we knew this is going to ...this is quite a probably big surgery. So we saw the team and we asked them if we can sort of just wait and see when he is a little bit older if he can have it a bit later.

And did you feel confident to be able to talk to them?

Definitely yeah, yeah definitely. That’s I mean... I we were worried, you know, because this surgery is sort of we were worried if it was going to be successful, what’s going to happen if it’s not successful? You know, I mean so I have to say, you know, they recommended to have the surgery when he was probably about 5 years old. We just wanted more time.

Yeah.

You know, we went, we went back to them and they were, they were fine. They were very, very good. They said, “That’s OK if you need more time, if you think that maybe he will improve, you know, we are happy to wait for another year and to see, to reassess him again.” And they will talk. There wasn’t any, any pressure like, “Oh no, you know, this is what we think needs to be done,” you know, they always, you know, it was like partnership considering, you know, how we feel…

Yeah.

…how [son’s name] feels, and then let’s find what is the best for [son’s name].
 
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Mary Y and her husband were given the opportunity to speak to the surgeon who would be operating on their son, which they found very reassuring.

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Right, so you found that a little bit…

Too emotional.

…emotional?

Yes, yes. And... when we called the cleft team I guess, you know... and she asked us, she said, “Right,” we said, you know, “Are we going to go and see the surgeon when the baby is born?” because we were expecting that. And she said, “Well no, would you like to speak to Mr [name]” I think she... “Now? I mean if you want you can speak to him, you can see the team now, you can ask him all the other questions if he, if you need more information he will be able to tell you about the surgery, he’s going to show you the pictures,” she was fantastic. And I said, “Yeah,” you know, we really wanted to see him. And we saw him probably two weeks after, so I was maybe 22 weeks pregnant. We went to [hospital name] that was really good, that was fantastic and that made all the difference seeing, seeing him, you know, who is going to operate.

In person yeah.

Seeing the person: they told us, “It’s going to be, it’s going to be him.” And he was very, very honest with us, he was very open. He was, he’s very you know, he didn’t, he didn’t give you too much information because of course, you know, we are still learning, and too much information just goes over the head, isn’t it?

Yeah sure.

We are still emotional. I remember that I was so nervous, I was so upset, but he was really kind; a very kind person. And he really reassured us, he showed us the pictures, he said, “Would you like to see the pictures of some of the babies that I operated?” He told us, you know, how many he operated per year, he explained to us, and we looked at the pictures and we thought, “Wow, you know, this is going to be OK.”

Hmm, hmm it sounds like you were very reassured at that point, yeah?

Yeah.
 
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Mary Y did not experience any negative comments when her son was born but believes there is still a case for raising public awareness regarding cleft issues.

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I didn’t have. I think some, I know that some, some mums find difficulties to take babies to, to public, you know, to go for shopping. You know, you know, we were determined, you know... you know, we will, will be just like normal. You know, we took... I took everywhere. Because I had an older son, well he was only 3, so I said, “Well I can’t, you know, not do stuff with my older son, he’s only 3: I’m going to do exactly the same as I did, go to all this mother and toddler’s group with, with a baby.” That was all pre-surgery, so there was a cleft there, and his cleft was quite wide, you know. So I went everywhere: I never had any unkind comments.

I even once I had when I was just walking with my pushchair, and there was one mum she said, “Oh, oh you have a baby with a cleft. Could I have just a quick, quick peek, see how is he? Because my son was born with a cleft.”

Oh OK.

So I thought, “OK.” So there wasn’t any I mean people will ask the question, you know, but it wasn’t in any... oh any rude or unkind comments; they were more like, you know... if I can... for me it was more like, you know, if I can educate them.

Yeah sure.

You know, it’s…

So it was quite an open experience?

Yeah for me it was open. For some mums maybe it’s not some days. But that’s... I didn’t have, we didn’t have that problem. You know, as I said, we went out everywhere and we, and I think it’s just... if any problem I would have that will be if people will call it harelip. 

Then I would just I would correct them. I would say it’s the term that we use now is cleft lip.

Yeah.

And that’s the only thing, you know, sometimes. But I think it’s less and less now people will use the harelip.

Yeah.

And I... I don’t like that comment. But I think... people need to be educated and I would, I would, you know, sort of just in a nice way I’d say, “Well actually it’s a cleft. And why not hare, you know, you don’t call, you know, because, you know... it’s a wrong way to describe it.” That’s the only thing, you know, if anybody would make any, any sort of comment that I had to sort of correct them.

OK.

I think it’s important, public awareness, yes what is I think is lacking, because I think it’s a lot of people are... very misinformed, and I think I think we need to raise more awareness, positive experience I think. 
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