Rhiannon – Cleft lip and palate

Rhiannon’s youngest daughter was born with a cleft palate. It was detected by a midwife who was concerned that she was not feeding well. Rhiannon’s daughter has undergone surgery to repair the palate, however she may also require orthodontic treatment and speech therapy in the future.

Rhiannon is married, a homemaker and a full-time mother of two daughters. Her youngest daughter was born with a cleft palate. Rhiannon first found out about her daughter’s cleft palate about 6 hours after her birth when a midwife conducted a routine test because she wasn’t breastfeeding and was unsettled.

The midwife on duty did not have much experience of cleft and was not able to feed Rhiannon’s daughter with a special bottle at all. Rhiannon’s daughter was taken into the special care baby unit (SCBU) to be tube fed and was left to go to sleep on her own. Because she was born on a Friday night she did not get to see a specialist nurse until the Monday morning and the midwife then explained that Rhiannon would be able to feed her baby with a squeezy bottle.

Rhiannon and her husband were unaware of the implications of having a child born with a cleft palate. The couple were also not sure of the cause of their daughters cleft although genetic tests were conducted and there is no family history of cleft on either side. Rhiannon and her husband have had a lot of support from friends and family and have been open about telling people. They have also received support from CLAPA saying that it is helpful to meet and speak to other families who have gone through the same thing.

Rhiannon’s daughter has now undergone an operation to repair the cleft palate. Prior to the operation the couple had regular meetings with the cleft service team and the surgeon. They felt at ease to ask the team and surgeon questions and trusted them with the care of their daughter. She had a general anaesthetic but when she fell asleep it wasn’t a big shock. They were kept informed throughout the operation and the surgeon spoke to them immediately afterwards. Rhiannon and her husband also met with members of the multi-disciplinary team such as the orthodontist and speech therapist as their daughter may also require additional dentistry and help with speech development in the future.

Rhiannon’s advice to other families is to “Keep calm – it is a cleft palate, but it’s not the end of the world. And you will get through it, even though it is hard at the beginning, it is really hard at the beginning, but it, yeah, it gets easier.”

The CNS was in regular contact with Rhiannon and she was able to meet other members of the multidisciplinary team including the surgeon who repaired her daughter’s cleft palate.

Age at interview 27

Gender Female

So I understand the cleft team is multidisciplinary, and I wondered, you said you had a lot of contact with the surgeon, I wondered what other services were involved at that point?

Well I have a cleft nurse assigned to us as a family.

Yeah.

So I have her mobile. I text her occasionally if I’m worried about [daughter’s name] feeding, or the way that she is, and shes always available for me to talk to. We also have an orthodontist as well.

OK hmm.

Who is already, like I’ve met him, even though [daughter’s name] hasn’t got any teeth yet it’s, you know, it’s… that’s really… like weve met everybody. And a speech and language therapist as well, weve already met them and spoken to them so… and they’ve given us advice about her developing her speech and stuff.

And I’ve been, we have regular meetings with them at the hospital and so I’d met the surgeon beforehand and I felt at ease about that. Because that was something that I was… really concerned about because, you know, I had to trust this person with my baby.

Yeah sure.

And that was something that I, you know, was struggling with. So actually able to meet him and ask any questions that I had, and to feel at ease with him as well
Yeah.

as something that was really important to me. And I had to, you know, just trust him completely. And I have to say the hospital were amazing. We were told everything that was going to happen in the operation, like explained it really simply
Yeah.

You know, down to the anaesthetic and how she would react as well to the anaesthetic.

OK yeah.

So that was, you know, so when .. you know, she did fall asleep it wasn’t, you know, massively shocking or anything, because wed been pre-warned. They were really supportive, you know, understanding that I was crying my eyes out and
Yeah sure.

supporting me through that. And she had the operation, they kept us informed about when she came out of theatre, and then they took us down as soon as we… as soon as we were able to. There weren’t any delays about that.

OK great hmm.

And then soon after the operation, the surgeon came and spoke to us as well, and told us that it was successful. And, yeah, so that was… really, really good yeah.

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Rhiannon had genetic tests but these did not help to identify the cause of her daughter’s cleft palate.

Age at interview 27

Gender Female

Did you have any ideas about what the causes of the cleft might have been?

No. We did get [daughter’s name] had some blood taken for genetic tests to see if that was why she had it, but nothing has come back, so we have no idea why the cleft happened, it was just a one-off.

OK.

Yeah because it doesn’t run in either of our families.

Right, theres no family history?

No family history of it at all, yeah.

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Rhiannon describes the visit she had on the ward from a CNS following the birth of her daughter. The CNS explained to Rhiannon how the care of her daughter would be delivered.

Age at interview 27

Gender Female

It was, it was quite unfortunate because it happened on a Friday night there was actually no cleft palate nurses available to come and see me until the Monday.

Oh, oh no, sorry, someone did come and see me on the Saturday, but it was a really quick meeting, and it was like information overload about cleft palates

Right.

and stuff. And… I had to wait until the Monday morning to [brief interruption] to I had to wait till the Monday morning to speak to a cleft nurse, so yeah, so that’s when we got more information and it was a bit

So when the cleft nurse, did the nurse see you on the ward or?

The cleft nurse, yes, in the ward, she came to the hospital to see us.

Yeah OK.

Yeah.

And what did she explain to you?

She explained… most [brief interruption] well she explained to me what a cleft palate was, what would happen to [daughter’s name], how I would be able to feed her with a squeezy bottle, so she brought along some bottles to feed [daughter’s name].

Yeah.

And explained that to us, and gave us the opportunity to do that then. She also explained to us about the operation, and what that would entail, and when that would be, and just all the information that we needed, yeah, so that was really helpful.

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