It’s one of the most common birth defects, affecting thousands of families every year in the UK and around the world. If you’re reading this post, the likelihood is that you have received a diagnosis of lip/palate at your twenty-week scan (or a friend or family member may have received this diagnosis for their baby and you are looking for ways to support them). Receiving the news that your unborn baby is going to be born with a cleft lip/palate can be incredibly overwhelming.
It’s natural to feel a range of emotions, from sadness and fear to confusion and uncertainty about what the future holds for your baby. It’s also completely normal to feel something as strong as total devastation when you are told there is something wrong with your baby. I have been there myself. When my son (I didn’t know he was a boy at that stage) was diagnosed with cleft lip at my twenty-week scan, I was also devastated. Although it was probably a little easier for me to digest the news because I was born with a cleft lip myself, it still came as a massive shock and one that my husband and I were totally unprepared for. But I promise that amidst the initial devastation, there is hope, a huge amount of support, and in most cases, a clear path forward.
Cleft lip/palate, also known as orofacial clefts, occurs when the tissue that forms the upper lip or roof of the mouth (palate) does not fully fuse during early pregnancy. While the exact cause is often unknown, research suggests a combination of genetic and environmental factors may contribute to its development. It’s very important not to blame yourself though. There is nothing you could have done to prevent your baby from developing a cleft, and it is absolutely not your fault. It’s essential to remember that a cleft lip/palate is just a part of your baby’s story and does not define them. With the right care and support, they can thrive and lead fulfilling lives. The majority of children born with cleft lip/palate will in fact go on to lead completely normal lives.
The first step is to connect with a specialist NHS cleft team who will guide you through the treatment pathway. These teams consist of various healthcare professionals, including cleft surgeons, clinical nurse specialists, speech therapists, orthodontists, and social workers, who specialize in caring for children with cleft defects. In our case, I was contacted by a wonderful specialist cleft nurser the same day that we received the diagnosis, and she worked with us all the way through to my son’s surgery when he was eight months old. She also provided support after the surgery, including advice on after-care, feeding etc. She was an amazing source of information and support throughout the process and I will always remember her.
This NHS page will show you where your nearest cleft specialist centre is to where you live:
https://www.nhs.uk/conditions/cleft-lip-and-palate/treatment
Most children will be treated at the centre nearest to them. Your baby will most likely require reconstructive surgery to repair the cleft lip/palate, either performed in one operation within the first year of their life, or in stages over the first few years of life. The severity of the cleft will determine the number of surgeries needed and the specific treatment plan.
One of the hardest things for us was that they weren’t able to tell us from scans whether our son would have a cleft of his palate as well as his lip. We had a lot of scans (including 3D ones) where they tried to examine the palate, and they finally concluded that they didn’t think his palate would be affected. It turns out that it was affected, but it was quite a long, thin hole in the roof of his mouth which wouldn’t be too difficult to repair as there was still a lot of tissue for them to work with.
Unusually, the surgeon offered us the choice of having our son’s lip and palate repaired separately, or at the same time. Normally this wouldn’t be offered, but as his cleft palate wasn’t too severe, he was happy to do it all at once. We decided that although it would no doubt be a huge ordeal for us all, it would be better to get it over and done with in one operation rather than two and he had the operation when he was eight months old.
Early intervention is key, as clefts can impact a baby’s ability to feed and may affect speech and language development later on. Special bottles and feeding techniques will most likely be recommended to make feeding easier for your baby, and your cleft team/nurses will advise on this at a very early stage after diagnosis. One of the most upsetting things for pregnant couples who receive a cleft diagnosis is that their baby mya not be able to breastfeed. I was in floods of tears the evening after our cleft nurse told me that if my son’s palate was affected, it would be very unlikely that he would be able to breastfeed. Our first baby was exclusively breastfed, so this was really devastating for me.
I had to do a lot of work on myself throughout the rest of the pregnancy to come to terms with the fact I might not be able to breastfeed, and I really had more or less accepted it by the time he was born. It turns out that even though his palate was affected, he was able to breastfeed, and I made a video diary of my experience feeding him which you can watch here:
https://www.youtube.com/watch?v=Ix2EUhSZhs8
It is important to understand that while breastfeeding a baby with cleft lip is often possible, breastfeeding a baby with cleft palate is much more difficult. My cleft nurse explained it to me as being like a straw that has a hole in it. Even a small hole will affect the suction, and if there isn’t enough suction, the baby will struggle to get enough milk.
My son was very keen to breastfeed from the moment he was born, and had a comparatively minor cleft of his soft palate. The fact I had already breastfed my first baby no doubt helped, and I went into it with very realistic expectations. I started off putting him to the breast for comfort more than anything – he seemed to really like it. I never expected that after a few weeks he would be exclusively breastfeeding with no need for top-up bottles of formula.
This all came as a great surprise to the cleft nurses and doctors caring for us as much as it did for me. So while I urge you to watch the video of me breastfeeding my son and to absolutely give breastfeeding a go with your cleft baby, it’s important to go into it with realistic expectations.
One of the positives we have found about our son’s cleft lip/palate diagnosis is that all of his care occurs in the same hospital and the quality of care has been second to none. He is now five, and during his routine checkups his surgery he sees the surgeon, dentist, psychologist and speech therapist and they also take photographs of his mouth in a special studio at the top of the hospital to check how his teeth and bones in his mouth are developing. He will be in this system until he is an adult, and I know that he will end up with the best-looking teeth/smile ever because he has such a dedicated team looking after him!
The care my son has received really has been very humbling. Speech therapy and language development support will also be part of your child’s care plan, if they need it, to ensure they reach their full potential. A clinical psychologist will provide emotional support for both you and your child as you navigate this journey together.
Joining a parent support group can be incredibly beneficial, as you connect with other families who understand what you’re going through. Whether it’s sharing tips on feeding or celebrating milestones together, having a supportive community by your side can make all the difference. I found the Facebook support groups really helpful when we received the diagnosis. I knew a bit about cleft lip surgery having been born with one myself, but it was really helpful to have a network of other parents who were further along in their child’s journey and could answer any questions or concerns I had. One particularly reassuring and positive addition to these groups was the many photos and messages that older children, teenagers and adults posted of themselves with their clefts, talking about the normal and fulfilling lives they are now leading.
It’s important to remember that while a cleft lip/palate may present some challenges, it also offers an opportunity to embrace your baby’s unique journey and celebrate their resilience. With love, patience, and access to the right resources, your baby will flourish and thrive, showing the world their beautiful smile both before and after their surgery to repair their cleft.
As you embark on this journey, know that you are not alone. There are so many resources and help available to support you every step of the way, from your nearest hospital cleft centre, to friends and family, to members of online communities. Together as parents of cleft babies, we can navigate this journey with strength, courage, and unwavering hope for a bright and beautiful future for our children.
Good luck!
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