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Your Story - Kelly & George

Hello my name is Kelly, mum to 2 boys - Bailey who is 3 and George who is 11 weeks old. George was born with a complete unilateral right sided cleft and palate with gum involvement.

My pregnancies for both were fairly straightforward. 12 week scan confirmed everything was okay so we began to share the news Bailey was going to be a big brother. The 20 week scan was heavily focussed on would the baby be blue or pink, boy or girl, a new brother or sister. But, this is where things took a turn. We told the sonographer at the beginning of the scan we would like to know the sex, but at the end. This is the anomaly scan after all and we would wait to know everything is okay before hearing what we really wanted to know, boy or girl. The scan was going well but he kept going back to the face, almost wanting

us to see it and mention it so he didn’t have to. He then said, “I think your baby has a cleft”. We were shocked.  Cue tears, panic, not really knowing what this meant. For us or the baby.  We were asked to leave the room and wait with all the other expectant parents until he was ready to call us back in again. Back in the room and we were told we'd have to come back and see foetal medicine who would confirm the diagnosis via further scans. This was in 2 days’ time.  We had to then ask, was the baby a boy or a girl, to be told he was a boy.

Driving home was heart breaking. Texts from people coming in “well, boy or girl?” It’s all anyone associates with that scan. I for one had totally overlooked the fact it could entail bad news on any scale. Then a phone call from my mum and all I remember was being on the hands free, sobbing, choking on the words “it’s a boy, but he has a cleft.” My partner took the rest of the day off and we headed straight to my parents and logged onto the laptop.  Image after image of various clefts filled the screen and I remember thinking “I don’t want this for my baby. It isn’t fair.” Being fairly sensible people, we knew there would be images and stories that would not be how the NHS deals with clefts so we quickly focussed on the NHS website and CLAPA. Quickly, we found a leaflet on the CLAPA site that explained what a cleft was, what would happen once the baby was born and shared a story so strikingly similar to ours, we thought it would help friends and family. We constructed a standardised text to send to everyone and attached the leaflet link, asking people to read it.

Overwhelmingly, the response from people was “it’ll be okay, the baby will be fine, there’s so much they can do now.” But that wasn’t my first thought. My first was ‘what if I don’t love him, don’t bond with him.’ Then comes ALL the guilt of thinking that because who in their right mind doesn’t love their own baby. Me that’s who, I’m that awful person. Round and round my head all the different thought processes.  Guilt that my baby wasn’t perfect, I’d wronged him somehow. Guilt that I was so upset over something that could be fixed, think of all the people who will hear things at the scan that are so SO much worse than a cleft that ultimately cannot be fixed. But this is my baby, and my baby has something wrong with him and that, to me as his mother, is shit.  It’s a really, really shitty time.

From the scan, we were referred to our local cleft team. We received a phone call that same day and told how things work and arranged a meeting for the following week.  By then, the shock had worn off but we were brave facing it really.  We had read anything and everything about clefts, we had questions to ask and generally, after that meeting, we felt things were looking better. A few weeks later, our nurse arranged a 4D scan at a private hospital with a consultant who specialises in clefts and he confirmed a diagnosis of right-side unilateral cleft with gum notch and likely palate involvement. We generally plodded along the rest of the pregnancy up until about 37 weeks or so. 

The impending arrival of our baby seemed to be too much. Stress and anxiety was at an all-time high. It all came to a head when we both admitted we were scared, scared of the fear of not loving him, of feeling we’d let him down already. Scared of how people, strangers mainly, would look at him and react. As a talker, I knew I needed to speak to someone who could help. I got in touch with the cleft team Psychologist and she helped me immensely. She understood the terrifying fear I was experiencing and from a professional point of view told me all those feelings were okay. She didn’t just tell me to stop being silly, of course I would love him. Which, with all good intention, is what others had said. She didn’t just say ‘it’ll be okay' she understood it was shit. And scary. And that was okay. It was a weight off my shoulders to get the words out in to the open and to not be met with shock.

Looking back now, as the 11-week-old bundle that is George is stirring in the Moses basket in front of me and I can’t help but think all that worry was somewhat pointless. Not needed.  Unnecessary. I carried the anxieties with me, from diagnosis, through the planned section right up until the moment he was born. When we first made eye contact as he was lifted over the screen and I thought ‘you are so much like your brother, how could I ever doubt it.’ But my god, do I love him. With every bit of my being.

I suppose what I’m trying to say, the point I’m hoping to project is, it is hard to get a diagnosis, no matter how big or small, but it’s okay to be scared. It’s okay to fear the worst because it all dissolves the minute you lay eyes on your baby.

Kelly is more than happy to chat with any other mums who have had the diagnosis or those who have a similar cleft to George, you can contact her here!

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