Sarah and Luca’s Story
Sarah Mahone got in touch with CLAPA over Cleft Lip and Palate Awareness Week this year to share her journey with her son Luca, who was born with a microform cleft lip.
Sarah and Luca’s Story.
“I don’t usually write posts like this, and I was a bit hesitant to share, but I want to raise awareness of cleft lip and palate, as it’s not something I knew much about until my Luca was born with a microform cleft lip.”
“A microform CL is a rare type of CL where the muscles of the lip fail to fuse correctly at 6 weeks gestation, giving the appearance of a scar on the upper lip. Luca’s cleft was categorised as an incomplete microform CL, meaning his cleft wasn’t “open,” which is why it wasn’t picked up during our ultrasound scans.”
“The first time Ste and I knew about it was after birth, so this came as quite a surprise. We didn’t notice at first, but when we were admiring his gorgeous little face, we saw a raised mark running vertically from his nostril. We asked the midwife what it was; she said it looked like a cleft lip that had repaired itself in utero. (Microform clefts are often referred to as congenital healed clefts.)”
“This was the first time we realised that our baby may have a cleft lip, and at this point, potentially a cleft palate. I was worried about how this would affect him; I even started thinking about the future and the challenges he may encounter. Bear in mind, I’d only just had my baby, and I should be enjoying these moments, not spending them worrying.”
“I even started thinking about the future and the challenges he may encounter. Bear in mind, I’d only just had my baby, and I should be enjoying these moments, not spending them worrying.”
“Luca was referred to the most incredible cleft team at Alder Hey, and our cleft nurse specialist, Louise, came out two days later to give a full diagnosis. I found it very difficult to process this news and I blamed myself for it.”
“I cried a lot and I tried to pinpoint what I’d done to cause this, even though I was extremely cautious throughout my whole pregnancy. Louise reassured me that it was nothing I had done wrong and that it’s a combination of genetic and environmental factors coming together in a way that cannot be predicted or prevented.”
“Louise acknowledged my feelings and insisted that it was okay to feel the way I was feeling. She suggested I take some time to digest all of the information I had been given, and also put me in contact with other parents going through a similar journey. I found their positivity to be so inspiring.”
“Luca looked perfect with his cheeky smile! However, cleft lip/palate is not just about appearance. It can cause difficulty with feeding, hearing, speech, teeth, and more. For this reason, we wanted Luca to have surgery. But still, there is no quick fix.”
“Luca will be under the care of the cleft team as he grows up and we have already spoken with his surgeon about a potential alveolar bone graft in the future.”
“The hardest part of our journey was when Luca went for his surgery when he was just four months old. I knew he was in the best hands, but it was so difficult to dress my tiny baby in a surgical gown, watch him be put to sleep, and walk away from him for 4 hours. It was incredibly challenging. Thankfully, everything went as planned and we took him home the same day for plenty of cuddles.”
“He is a happy, healthy little boy and we are so proud of him.”
“I am so grateful to my family, friends, and the Alder Hey team for their help, support, and positivity. Thank you, Ste for being so strong for us all. Thank you to my family for being a listening ear when all I did was ramble on about my worries. Being able to talk through my feelings and concerns gave me comfort.”
“If you know someone affected by cleft, please be a listening ear for them. You don’t have to say anything back, just give them the space to voice their thoughts and feelings.”
“If you know someone affected by cleft, please be a listening ear for them. You don’t have to say anything back, (I wouldn’t have known what to say beforehand!) just give them the space to voice their thoughts and feelings.”
“I feel a lot more positive now and hope that in the future I can support another family going through their cleft journey.”
