💥LEJOG IN 7 Team💥

Sam “The Engine”

Ben “ The Red Squirrel”

Nick “The Drafter”

On the 16th of December 2021 my wife and I welcomed a baby boy Finlay, our first born. Finlay was everything we could have hoped for and it goes without saying we were completely in love. He had all his usual new born checks and we were told everything was fine, he was a healthy 8lb 8oz with no obvious issues. My wife Anna was very keen to breastfeed, it became clear very quickly this was going to be a difficult feeding journey. He had no suction which meant no latch, he’d constantly fall off the breast. We were told to feed him using a cup to prevent nipple confusion and informed he had a tongue tie. After a few days of cup, syringe feeding and persisting with breastfeeding, we paid for the tongue to be privately cut at Spire in Leeds with the hope to see some improvements, sadly there was little to no change. We saw midwives and health visitors who all advised us to stick at it and assured us what we were experiencing was normal. Who were we to question that, it was our first child, this was completely new to us. Two weeks after Finlay was born Anna and I were going to register his birth, he yawns and Anna noticed something wrong with his throat, saying “it’s not right, it doesn’t look like mine but I can’t put my finger on it. But cleft palate is in my family”. Anna’s Aunty Diane and Great Grandad both had a cleft lip. We rang the hospital who advised us to seek medical advice from the GP as we’d been discharged from their care. We got a GP appointment, the GP told us it was just his throat and what we were experiencing was normal adjusting to life with a new baby and both of Mother and Baby getting used to feeding. Anna (who to give you an insight into her personality is like a dog with a bone) she knew something wasn’t right, she was persistent too. It was hard to believe we’d seen so many professionals all assuring us he was fine although he’s wasn’t feeding well, dropped down in weight and regularly having long spells of dry nappies. Anna took Finlay to a former boss who was an orthodontist, he did a check and advised we push to see a paediatric consultant. The paediatric consultant referred us to the feeding team, a nurse came to our house, took one listen to Finlay’s swallow and agreed with us something wasn’t right. He was diagnosed with an unsafe swallow, prescribed thickener to be used straight away to help him manage fluids. We saw the paediatric consultant the following day who looked in Finlay’s throat and said ‘o wow, he’s a Bifid Uvula and complete Soft Palate Cleft, I’ve worked in paediatrics for 35 years and I’ve never seen one’. Those words created a world wind of emotions for us. We were sad for him that he had an issue as no parent wants that for their child but filled with so much relief that we were right after weeks of been told he was completely fine. Finlay was 12 weeks old when his cleft was diagnosed, whilst that’s all part of his story now, we lost a lot of the newborn stage to stress, tears, relentless worry and appointments to monitor his progress. Once Finlay was under the care of the cleft team at Leeds General Infirmary the treatment and contact has been amazing. The team regularly monitored his development, we were assigned a Speech and Language Therapist and if he needs it an orthodontic team for when he’s a teenager. At 9 months old Finlay had his surgery to repair the palate and rebuild the uvula. He was in arm splints and recovery for a month, after a month the team confirmed his cleft repair had healed fully. He’s 3 now, he’s such a resilient kid, I think Anna and I were more worried and affected by the process than Finlay was. We’ll continue to see surgeons at different point of his development. He’ll have regular meeting with his speech and language therapist who will continue to assist us with any speech issues he may have.

The chances of our second child having cleft palate is around 3-5% with me and Anna not having a cleft and Finlay having one. So whilst we knew there would be a chance we didn’t think it would happen again. On the 13th of June 2024 our second born son Cameron was born. We were better prepared this time around so decided to have him at either of the Leeds Hospitals. A neonatal alert was put on the system for a thorough check at birth. The 20 week scan can only show if a cleft lip is present, we knew Cameron didn’t have a cleft lip from the scan. We felt confident a cleft wouldn’t be present a second time around. Not long after Cameron was born bubbles were coming from his nose, I mentioned it to Anna and we both knew straight away. Our fears were confirmed during the neonatal examination and he was confirmed to have a complete cleft of the hard and soft palate. The wind felt like it’d be sucked from the room, here we go again. Thankfully because it was found at birth the experience was completely different, we were kept in hospital to monitor feeding, Anna pump’d knowing direct breastfeeding wasn’t possible. The nurses directed us to CLAPA again to register for a free Dr Browns bottle, a type of bottle that assists a baby to feed due to lack of suction. Cameron will undergo treatment to repair his palate exactly like Finlay. This is due to take place in early summer and by august he should be fully recovered and back in nursery playing joyfully with his big brother ❤️.

We were directed to CLAPA, we found so much comfort in the support from other parents and families who are going through the same thing on the parents Facebook group. Families across the country who are getting diagnosed, waiting surgery, having surgery or going through the post operation process everyday, each sharing their own unique story with the hope to help another.

To raise money for CLAPA myself and two friends Ben and Nick are going to cycle from Lands End to John O’groats on the 16th of August 2025. A total of around 900 miles, we are going to cycle 140 miles a day and complete the full journey over 6.5 days. Without the support of CLAPA we would have felt very alone in the process, we wouldn’t have had the chance to test a bottle Cameron needed desperately before purchasing them. We appreciate anything you can donate, every penny helps and we know first hand how much the help and support means to families going through similar things to us.

Thanks

Sam, Anna, Finlay & Cameron

Nick & Ben

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 and learn to cope.