A Game of Operation
Updated: May 10, 2019
On 2nd July 2018 we, excitedly, went for our 20 week scan. However, our scan was cut short as the sonographer had spotted a problem. She said the thought our baby had a cleft lip and potential palate but this would need to be confirmed by a more senior sonographer at the Foetal Medicine Unit. We weren’t completely sure what this meant for us and our baby and we started to panic.
I remember sitting in a Boston Tea Party, in tears, trying to comfort each other. The shop was our wedding venue before it changed hands, so we'd planned to go back there to have a celebratory cuppa after the scan. But we were there in completely different circumstances.
Luckily, we didn’t have long to wait for the next scan, where we had a comprehensive check of everything and the cleft was confirmed. They could only confirm the lip cleft as their scans don’t show up the palate properly. It was an anxious wait to meet our little boy to see the extent of the cleft, involving lots of extra hospital visits and check ups. We even got a free 4d scan at Babyvision via CLAPA. It was crazy to see our baby's face so clearly!
The day Teddy arrived was the most incredible day of our lives. After 16 hours of labour, he was placed on my chest, screaming in all his glory. I’ve never felt so tired, happy or relieved. And in those first moments, I didn’t’ even think to look at his lip. I was just in awe of how tiny and beautiful our baby was. It was only when someone else mentioned it that we looked. It couldn’t have mattered any less. Our boy was with us, after wanting him for such a long time. He was so perfect.
Fortunately, only his lip and gum were affected so we had the best of a bad situation. The cleft affected his feeding and we were unable to breastfeed. It also caused Ted a lot of wind and colic, to the point that we ended up in A&E when he was 5 days old.
On 8th April, at just over 4 months old, Teddy had his lip repair. We spent a few days in hospital and it was a long week to say the least! I was definitely not 100% in control of my emotions and struggled to hold things together.
Handing Teddy over to the surgical team was the hardest thing I’ve ever had to do. It felt unnatural to give him over to strangers who would cause him pain in the short run. Holding him close whilst the team put him to sleep was heartbreaking but we were reassured when they asked for the name of his favourite teddy (Jelly Cat the octopus) and took him into theatre with them so he could wake up next to something familiar.
My Mama Bear instincts made an appearance but I had to politely tap them back down like a gentle game of whack-a-mole whilst we busied ourselves with coffee.
We got a call to say Ted was out of theatre two and a half hours later and rushed back to get him. It was such an emotional moment. Our baby had a new face. He looked so peaceful, asleep on the hospital bed. We were told we could pick him up but I was so conscious of not hurting him any further. Then we sat and cuddled him for ages until he started waking up properly.
The surgeon got the first post op smile (which I was secretly gutted about!!) but I guess he deserved it for how he has helped our son.
After a few weeks of managing his pain, Teddy seemed to be getting back to himself. His feeding has improved so much, he can smack his lips together now, and his breathing is better as his nose is straight.
The Cleft Specialist Team at Birmingham Children’s Hospital have been wonderful. Every person we have encountered has been so supportive and available whenever we needed them. They have really taken care of us as a family.
Cleft lip and palate awareness week is from 5th to 13th May this year so I hope this has helped spread a bit of information about it.
We cannot recommend CLAPA enough and the NHS is a magical thing.
We have been contacted by so many lovely people going through the same journey we did last year. Please feel free to get in touch for a chat and share your cleft story with us. It's good to talk to people going through a similar thing.