A-Z

Iva

Age at interview: 29
Brief Outline: Iva is a Bulgarian living in the UK and is studying for a PhD in marketing. Her husband is also Bulgarian and works as a pharmacist in the UK. Their son was born with a cleft lip.
Background: Iva is a Bulgarian living in the U.K. Iva is currently studying for a PhD in marketing and is married with a son of 11 months.

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Iva is a Bulgarian living in the UK and is studying for a PhD in marketing. Her husband is also Bulgarian and works as a pharmacist in the UK. During her pregnancy Iva had received regular check-ups in Bulgaria. However, their son was diagnosed with a cleft lip during a routine 20 week scan in the UK. The diagnosis was a big shock for Iva and her husband because in Bulgaria mothers expecting children with clefts are usually advised by health professionals to terminate their pregnancy. On hearing the diagnosis Iva and her husband looked at the internet to find out more about what to expect regarding their son’ cleft. They were overwhelmed by the information and ‘awful’ pictures they found of children born with clefts. They also consulted Iva’s husbands’ parents who are both doctors in Bulgaria.

When Iva’s son was born it was apparent that it was an incomplete unilateral cleft which was a great relief for the couple. Although he was able to breastfeed a cleft nurse also gave Iva advice about expressing milk with a pump and using specialist feeding bottles. Iva and her husband made a decision to stay in the UK as they were aware that the treatment and surgery their son would receive for his cleft would be superior to the treatment he would get in Bulgaria.

Their son had his lip repair surgery when he was 4 months old. He made a good recovery and was able to breastfeed again on the same day. Iva and her husband have found their cleft nurse to be very supportive and the couple also used the CLAPA Facebook pages to make contact with other parents with children born with clefts. Iva is optimistic regarding her son’s future and believes that children with clefts are special children that have ‘been kissed by an Angel.’
 

Iva recalls how the sonographer detected the cleft lip and told her that it was a cosmetic condition and the gap in the lip could be closed.

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Yeah the lady that was doing the check-up she, she started everything was fine, she was looking and she was saying, “Nice and healthy, nice and healthy,” and just at the end she, she became very concentrated and she stopped speaking and for maybe around 5 or even between 5 and 10 minutes she was trying to see his lip.

And when she said cleft lip I turned to my husband and I said to him, “What does this mean?” And he said in Bulgarian it’s XXXXX. And I was just, because I remembered just these pictures in my head, and I was just…

So that must have been?

…the most awful moment in my entire life.

Oh dear.

I was absolutely devastated. And she gave us a brochure with the image of a small boy, and actually his repair was really very nice. But I don’t know, I didn’t know then what I could expect.

What to expect hmm.

Yeah, yeah.

And so who gave you this information, was it the sonographer?

Yes the lady that did…

…who did the scan?

…the scan. She said, “Wait here for five minutes,” she went somewhere and came back with the brochure, and she said, “You will be called by a nurse, a specialist cleft nurse in the next few days. She will come and show you pictures. Don’t worry. Actually you have nothing to worry about because I told you your son is absolutely healthy. This is something cosmetic; it will be repaired. Don’t worry.” But I was, but nothing could help in that moment really, I was just crying and crying and crying. And I told why.
 

Iva explained that giving birth to a baby with a cleft in her home country would mean her child would receive poorer medical care. She also felt her home country would be less accepting of a child with a visible difference.

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Unfortunately in Bulgaria the people are far behind in their understanding of cleft lip and palate, and not only this unfortunately. So my husband’s parents, they are doctors both of them.

OK hmm.

So they said, “We spoke with a lot of colleagues and most of them are saying they are young people, better to do abortion and to have another baby.” They just don’t know a lot about this condition and they are thinking, oh scary things, better just…

Is that because the treatment is not so good in Bulgaria or is it other reasons or?

I think it’s just because they are not well informed there. 

OK.

In 21st century now we have such good plastic surgeons, but unfortunately the people there are thinking that this is related to other things, they just don’t know, so they think, oh better just…

So they’re scared of the unknown?

Yes, yeah, yeah, yeah unfortunately there is a lot to do there in raising the awareness and   creating specialist teams and everything. I mean in Bulgaria we don’t have, like here, specialist hospitals dealing with…

OK so they go to a general ward?

Yeah, yeah which is not really good, because they have a good... we have good surgeons but the surgeon is not working with the orthodontist and the other people involved, so here is really…

So it’s the communication with the other services…

Hmm.

…which is lacking in Bulgaria, would you say?

Yes, yeah, yeah, yeah, yeah and general, the general awareness of the public. Because I remember I saw a study for cleft lip and palate in Bulgaria and it was saying, I’m not absolutely sure, but it was something around it was saying that around 80% of the children born with cleft lip and palate in Bulgaria their parents were consulted from the people in the hospital, from the doctors, just to leave them for adoption or offer her child up for adoption. 
 

Iva explains how her son was born by forceps following an exhausting labour and discovering he had a cleft lip only.

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So it was natural birth with forceps, if this is a natural.

Yeah, yeah.

But still it’s, yeah, it was.

OK.

Yeah they were hesitating because I didn’t, I didn’t have very strong contractions, so they were hesitating should they do C-section? But I was very exhausted at the end so they were hesitating C-section or... and they just left, left me for a few hours, the most horrible hours [laughs] in my life. It was overall 30 hours everything.

Very complicated, yeah, at the end I was just like dead.

You must have been exhausted?

Yeah I was absolutely exhausted. I was saying, “Just take the baby out please, [laughs] I just can’t anymore.” And they, at the end, hmm one doctor came and said, “Yes I will do forceps.” And I was very happy that, at the end, something will be done just to get the baby out. And yeah he was born and at the beginning, I mean after he was born he was taken, you know, for wee check-up, and I was asking everyone, “How, how is the cleft? How is... how is the cleft?” I was just asking this question, “Is it a big one? What can you see?” And my husband was there as well. And he [husband’s name] because he was sitting here next to me and I was just asking…

Your husband saw him first?

Yes, yeah and he said, “It’s not a big one, it’s not a big one.”

OK.

And they gave it to me and I saw that it’s just like a line here. And I was like, “Oh,” I was saying to everyone, “I am so happy, thank you very much everybody for everything, and I am just so happy, so happy.”

Yeah.

So yeah, it sounds as though it was causing a lot of anxiety?

Yeah, yeah, yeah, yeah, yeah I didn’t know what to expect. But when I saw that it’s just like a line here, it wasn’t like a big gap, it was just like a line, and after that even I saw that it’s not even going up to the nose, it, it’s just…

OK so

…till the middle maybe here. So I was really, really happy. And I asked them, “Can you check the palate as well?” But it was during the night, they, I think they, they didn’t have…

They didn’t do it immediately or?

There was one person there, he said he checked and in his opinion the palate is fine. But he said, “I am not a specialist. Tomorrow you will have…”

OK but he was a doctor though?

I think so.

Yeah.

I really…

OK.

But he said, “Tomorrow you will, he will, the baby will have more thorough check and you wil ... they will say for sure. Because I am, I’m... but I think, in my opinion, he’s fine,” he said. And I was very, very happy.

Reassured?

Yeah it was just... overwhelming [laughs] experience.
 

Iva discusses her experience of her son’s lip repair at 4 months and how she found it difficult to know that he would have a general anaesthetic.

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He had the lip repair and they said they will check again the palate because sometimes the babies could have sub-mucous, a sub-mucous cleft.

Sub-mucous?

Sub-mucous, like it means like the skin is there but, but beyond the skin I mean, you know, there is a cleft.

Oh so the lip is kind of superficial?

No, no, no not the lip. It’s about the palate. I mean sometimes the palate could, could look absolutely fine, but actually just the skin is there but... but there is still…

OK, only a covering.

Yeah.

There is a covering, so there could be a gap there which… 

Yes.

…is covered with a thin layer of skin?

Yes, yeah and they said during the surgery, because when the baby’s under the…

Anaesthetic?

…yes, it’s easier to check , to check in details. So he was checked again, and again everything was fine. The lip repair surgery was maybe one hour and something, or two hours, it was very, very ... difficult.

That was difficult for you, OK.

Very difficult, especially to see how the baby is going into the ward this moment when they are taking the baby to…

Oh when you say goodbye and?

And you know you are seeing your son for last time with this cleft that is so cute [laughs] so…

OK other people told me about this: it’s quite often a difficult time.

Yeah, yeah very, very difficult, very, very difficult, and I was crying like…

And so could you explain a bit more about that, are you happy to do that?

Yeah, yeah, yeah just... it wasn’t really the best time in my life, if I have to be honest; it was very difficult. Maybe a month before the surgery I was already nervous, getting nervous about everything, anxious. And we went for the surgery, we stayed in the hospital, I was with the baby in one room, my husband as well stayed in the hospital but in another like parent apartment or something. We were lucky that it was free so he, he could stay there and be, be with us. ...And they made a lot of check-ups on the baby. And on the next day in the morning, I think the surgery was scheduled for the next day in the morning. So the morning came and we were very... very worried. And... I knew I couldn’t... I couldn’t be the person to take the baby to the ward.

Yeah sure.

So I stopped in front of the ward and I said to my husband, “If you want, you could be with him during they are giving him the... you know…

The anaesthetic?

…the anaesthetic.”

Did they use a mask?

I think so. I don’t know, because I stayed. I knew that if you, if my husband wanted he could go with him, if not just I can’t, I knew.

So in the end your husband went?

Yes he went there, because I knew that I would be crying a lot and it won’t be helpful.

How did he manage with that, was he OK with that?

Oh my husband?

Yeah.

I saw that when that when he was coming he was coming back his eyes were red and he was starting to cry again. But I said to him, “Just don’t, just don’t cry, don’t cry.” And we went in the chapel.

The chapel?

Chapel, sorry yeah that one.

Yeah, yeah and yeah, just prayed for a few moments for him. And we went in the café, we had a coffee and we were waiting and waiting and waiting. It was an awful wait.

A long wait?

Yeah a long wait. And we went upstairs in the parent apartment where my husband was living. And at one point, I don’t remember for what, I, I went out, and when, and saw one of the nurses that I saw in the ward upstairs. So I ask her, “How is he? How is he?” and she said she said, “He is fine. We are just waiting; he is now in the recovery; we are just waiting a few moments to, hmm you know, for the anaesthetic to...”

To have an effect or?

Just, yeah, just to stop.

To wear off?

Yes, to wear off. And she said, “Very, very soon we will call you and you will be able to see him.” And after maybe ten minutes, very good that it was, we were very, I was very happy because he... I don’t know what’s the, the word, wear off you said maybe. He just recovered very quickly from the anaesthetic.
 

Iva describes how she heard her son’s cry when he woke after surgery to close his cleft lip.

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I heard a cry, but it wasn’t really his cry, it was very like slow, slowly, you know, because they are, he still was under all the medications. And…

Yeah sure.

…and I... and I cuddled him and I started, because he wasn’t able to see very well, to see me very well, and I started to sing, to sing in his very, I even started to sing, and he, I am not sure if he I think he wasn’t seeing me, he was hearing me actually, my song, and he stopped, he stopped crying.

He recognised your voice?

Yeah he recognised my voice, yeah.

And that was comforting?

Yeah, yeah, yeah, yeah they said, “Ah look now he stopped.” Because the nurses were trying to... to soothe him but... but he was crying and crying. And it was... just... this was maybe the most difficult point, because you are seeing him covered in... not covered, but with a little bit of blood, everything here is sore, he’s under medications, under drugs, and this was maybe the most awful moment.

OK so there is a lot of intervention at that point, isn’t there?

Yeah his arms, you know, they are putting, I don’t know what’s…

The cannula, is it?

Yeah, yeah, yeah this was maybe the most difficult moment. And we went in the in the room, and they said, “If you want to breastfeed, breastfeed him. But be careful because of the scar.”

OK so he was able to do that straight away?

Yeah after maybe half an hour because he was very hungry. Because we were instructed to not giving him food or water, I don’t remember, but maybe, maybe five at least it was around five hours before the surgery.

Yeah.

So he was... and after he had the surgery.

He must have been very hungry?

Yeah he was starving.

Yeah.

So maybe half an hour after the surgery I put him on the breast and he succeeded to breastfeed a little bit, but it was very, very, very... difficult. But thank God they are recovering very quickly, the babies, just for a few days.

Yeah.

He became really, really better.

So in the way he looked, in the way he behaved or both?

Yeah, yeah, yeah just oh I think this first day and this first night were very difficult because it was very painful for him, so he was under painkillers.

They were giving him painkillers every few hours because it’s surgery, you know, it’s very painful. But I think we continued to give him painkillers just for another day, one another day, and after that he was fine, he was fine, he managed very, very well. He’s very, very brave in my opinion, because he recovered really well, and we were sent home just after two days after the surgery I think.
 

Iva believes that there is a high level of awareness of cleft and physical appearance in today’s society due to the public profile of celebrities who were themselves born with a cleft.

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I have the feeling that he won’t have any problems. Because firstly we live in a society that the people are really open and they understand that everyone is different and everyone has their own issues. I mean it couldn’t, it could be, it couldn’t, it could be physical, it couldn’t be physical, but everyone is different, and everyone is like understandable about the others.

And hmm so I’m really not worry about anything. I even think that to have this small scar even it’s more beautiful than to be like perfect, you know, the perfection is not the most beautiful thing. I mean everyone is different.

Yeah.

Even I have a... 

So would you say it kind of adds some character?

Yes oh definitely, definitely.

Yeah OK.

Because there are a lot of like famous people with clefts.

OK.

Hmm like, oh I don’t know what’s the naming, if I am saying it correctly in English, but Joaquin Phoenix, is an actor.

Oh yeah, yeah.

As well they are saying that Cameron Diaz was born with cleft.

Cameron Diaz, I don’t know if this is true or not. But so it’s just one of those things that are not, not, nothing.

Yeah, you just don’t notice?

Yeah, yeah, yeah, yeah, yeah so I don’t have any worries about him going to school and maybe if he’s going to be asked by someone. Maybe not, maybe they will see something, maybe not, but I don’t think this is something that... that is... I don’t know.
 

Iva was very satisfied with the care that her son received in the U.K. when he was born with a cleft lip.

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Do you have any advice for the health professionals at all, the medical team, is there anything you feel which could be done better or…

No I think they are just…

…things which have been good?

For me everything was perfect, and I think they are just wonderful people and they are doing brilliant things with babies. And, as I read somewhere, they are doing this that the nature fails to do, so they are just brilliant and wonderful people. I mean they are repairing something that the nature fails to do very well.

They are finishing the job, so to speak?

They are finishing the job brilliantly, so nothing to worry about, and nothing to improve, in my opinion. I just had a wonderful experience with the [name] Cleft Team and I hope…

And the literature which was given to you, was it..

Yeah absolutely.

…the written literature, was that good?

Yes, yes everything was absolutely perfect, all the leaflets and the information was absolutely enough. And I just hope that we could take the good example from UK and transfer it to Bulgaria. I hope in Bulgaria we will have such wonderful teams and... one day maybe I hope so, the children there will receive such a high level of professional help like here.
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