As you mostly know, Felix was diagnosed with a cleft of the soft palate and Pierre Robin Sequence at birth. It basically means that the roof of his mouth did not join up at the back. At birth this means that babies have difficulty feeding as they cannot create the suction to get milk.
At first we were blissfully oblivious to what this really meant and carried on as though everything was fine, me demanding (of course!) to be discharged from hospital so visitors could come and see our new baby . Luckily we were assigned a cleft nurse from Great Ormond Street who visited us straight away to give us some squeezy feeding bottles to help make feeding easier.
Inevitably, things weren't fine though, Felix's weight gain was painfully slow and we endured weekly weigh ins to find he had gained much less than he ought to have. Under the fantastic care of Great Ormond Street, we had overnight sleep studies and numerous examinations with paediatricians to try to understand what else could be causing this lack of weight gain.
Finally, at 5 months when we were able to start weaning Felix, his weight picked up which was a relief for us all. Weaning a baby with a cleft palate is a particularly messy affair as they sneeze food out ALOT, but Felix is a pretty resilient little character and was never phased by this.
Then in September last year, Felix underwent surgery to repair his soft palate, which at first seemed to have gone well- he certainly recovered very quickly.
Naively maybe, we assumed this would be it and we could all move on. Unfortunately it seems it's now not so straight forward and we know now that there's further steps that will need to be taken.
For now, it means he can't pronounce 'da' or 'ba' ....which he clearly has no issue with and is a perfectly happy, healthy and very spirited toddler. We will get there, likely with more surgery and speech therapy but there's still quite a long journey ahead of us.
So.... we are running the Hampton Court Palace Half marathon for CLAPA. This charity ensure the nurses have the necessary bottles for you to use in those early days, they also have a great Facebook page. In the early days this was a huge reassurance to see other parents asking similar questions to those that we had, after getting beyond page 10 on google and reading articles from medical journals we didn't even understand in a severely sleep deprived state. I learned about how to wean a baby with a cleft and what to avoid from parents on this site. I've also been able to speak to parents going through the same journey and pass on our experiences to them. In the future they will also be useful to Felix who may have questions of his own when he's old enough to understand.
Running and exercise in general has been a massive help in dealing with the challenges of being a new parent and whilst we've both done various marathons before, getting back to half marathon fitness for me has been an epic year long challenge in itself.
If you can, please do donate- it would mean a lot if you can. Thanks so much, Becky, Jamie and Felix xxx
Three babies are born with a cleft lip and/or palate every day in the UK, and they face a 20-year treatment pathway which can continue well into adulthood. The Cleft Lip & Palate Association (CLAPA) is here to make sure no one has to go through this alone.
Every donation will help CLAPA to continue to provide specialist, targeted services to give people affected by cleft the knowledge and emotional support they need, while their UK-wide community brings together people from all walks of life to share experiences.
Becks and Jamie's Hampton Court Palace Half page
Raising money for CLAPA for Cleft Lip And Palate Association because their support has been invaluable to us
We provide services all across the UK to support people affected by cleft