Cleft lip help and support

Receiving a diagnosis, pre and post operation advice

Today marks a year since my little boy, Charlie, had his cleft lip operation in Nottingham. For those of you who are unaware, a cleft lip is where the lip hasn’t formed together properly in utero. It is no one’s fault and can happen to 1 in 700 babies. The Cleft Lip and Palate Association website, or CLAPA for short, is a fantastic website for more information on what a cleft lip and a palate is.

Cleft lip and palate association logo

I know my site is solely dedicated to parenting and fibromyalgia, but I wanted to write a post today for families who have just received the news that their baby has a cleft lip. I believe I can offer valuable insight into how to cope with the diagnosis, preparing for an operation and my experience during and after the operation in the hope that I can make one family feel less afraid. 

Receiving the diagnosis

My 20 week scan date came around and we were incredibly excited as we desperately wanted to find out the gender of our baby. On one hand, I always found scans such a lovely experience as I got to see my baby again and ask lots of questions but on the other hand, also a frightening experience. Often, the sonographer is very quiet whilst they are scanning and although that’s so they can concentrate, I start worrying that something is wrong!

During the scan, we excitedly found out that we were having a baby boy and we were elated. However, the news was then dropped that our boy was going to be born with a cleft lip. 

My 20 week scan where they found the cleft lip

Of course, if I heard that now I would know it is nothing to worry about and that everything will be fine, however back in 2021 I was absolutely clueless as to what this meant. I can remember bursting into tears and being led to a side room to await further information. Immediately, I was on to ‘Doctor Google’ and when I came across a completely incorrect article that said it may be something I did, the flood gates opened. Quickly though, I was reassured that this was not true in the slightest and was directed to CLAPA who provided proper, scientific information. Please do not Google until you have spoken to a professional about it. 

Cleft lip types form CLAPA

Support after the diagnosis

The Cleft nurse rang me as soon as we got home, to discuss the diagnosis further. She gave me a great piece of advice which was to take some time to properly process the diagnosis and if that meant taking some time away from work then so be it. My GP ended up doing this to help me process and because my anxiety was already bad, he put me forward for some CBT counselling and gave me some safe medication to help my anxiety.

It's okay to cry

CLAPA also have a dedicated peer and parent support section where you can ask to speak to a parent support worker who has been in the same situation as yourself. I took full advantage of this free service and spoke to a lovely lady in a very similar situation to my own who helped me out immensely.

Scans after diagnosis

We did not have to wait very long at all for a further scan with Nottingham’s Foetal Medicine unit, who had a dedicated cleft team. The exciting and wonderful thing about this scan is that we got to see our baby in 4D so we could see what the cleft looked like. I believe it was around the 24 week mark. We also came back again at 28 weeks to see if we could see further changes.

4D scan to see my boys cleft lip at 24 weeks

I was told that if his palate was affected, it would be like Charlie sucking through a straw with a hole in it and he would have to have special bottles and a longer operation. According to CLAPA, “a cleft palate is a gap in the roof of the mouth.”

The scans were a magical experience and really helped us realise what a cleft was and how little impact it would have on him. It was also a chance to have a discussion with our cleft team, meet our surgeon and ask questions. Really take advantage of those meetings with the team to ask anything and everything you want! There is no stupid or silly questions!

Birth of your baby

There is no reason that your baby’s diagnosis of a cleft lip should affect your birth in anyway. If anything, it means that a paediatric doctor should be available after delivery to make sure everything is ok. When my son was born, it was the happiest moment of my life and you do not even notice the lip at all. He was beautiful, amazing, special and such a bundle of joy!

My boy just being born

After a few moments, they did check in his mouth for me to see if the palate was affected but we were very lucky in the fact that it wasn’t. This meant he could breastfeed straight away and the cleft lip did not stop this in the slightest.

For the birth, a piece of advice I could offer you is to make sure it is prominent on your notes that your baby has a cleft lip and make the team aware just so you receive the right support. Furthermore, normally within 24 hours you should have a visit from your cleft team to check baby over, too.

After birth

Once you are home with your baby, the cleft lip disappears from your mind altogether! You are just in a glorious post-natal new-born stage like any other new mum and baby. I would suggest you join Facebook cleft groups just so you have others who have a similar experience to your own. Otherwise until your operation date, there is nothing further to worry about.

My newborn baby

When out and about with my son, I never had any negative comments about my son’s cleft from anyone. If anything it helped others to speak to me and share their own stories of a cleft lip or palate. It made you realise how common it actually was.

My little boy smiling with his cleft lip

A really important piece of advice is to take so many pictures because after the operation you really will miss their cleft smile.

Leading up to the operation

In the run up to the operation, you should be in regular contact with your cleft team in case of any issues, questions or support you need. Mine were invaluable in the lead up to the operation. We were still coming out of the pandemic our operation date was unknown. Normally, we were told our operation should be done in the first 3-4 months but unfortunately, due to COVID, ours wasn’t completed until he was nearly 10 months old. It didn’t matter because, of course, we still got to sample his beautiful cleft smile for a little longer.

My little boy

Furthermore, to prepare myself and my little boy for the surgery, I purchased a cleft lip story book. Then I added my own words to the book. I wrote it as if I was talking to Charlie about his cleft and what would happen during the operation. I also thought it would be a lovely keepsake for him later in life.

Finally in the lead up, do visit CLAPA’s page all about treatment. My advice would be to avoid reading about treatment antenatally but in the run up to the operation it is a good idea to familiarise yourself with the treatment process.

Operation date

Getting the date for the operation can be scary but then have a date to work with. For me, it made me feel less anxious and able to prepare myself fully. I got back in touch with CLAPA’s peer and parent support team so I had support from a parent who had been through the process already. I also posted on Facebook cleft lip groups asking for advice of what to take and expect.

Change is hard

Also, there is a service called Pyjama Fairies which is a website that make cute and easily accessible hospital gowns and pyjamas for children that have to go into surgery. It is an amazing service and we ordered a gown and pyjamas for him just in case. They were beautifully made and was a small touch that helped us cope just that little bit better. Make sure you order in plenty of time so your garments arrive before surgery.

My boy in his pyjama fairy clothing before his operation

Hospital bag checklist for you:

  1. Eye mask for you in case you have to stay in overnight. It will help you sleep with all the bright lights in the hospital.
  2. Headphones for when your child is in surgery. Ours took just under 3 hours so I made sure I had calming meditations downloaded that I could listen to.
  3. A book again for either during the surgery or for when your child naps.
  4. Snacks and comfort food
  5. Water – it gets super hot on the ward!
  6. Pjs and comfy clothing in case of an overnight stay
  7. Phone and phone charger
  8. Lip balm

Hospital bag checklist for baby:

  1. Socks
  2. Loose fitting vests that you can easily get over baby’s head.
  3. Loose fitting clothes that you can easily get over baby’s head.
  4. Nappies
  5. Wipes
  6. Toys and teddies to keep them occupied
  7. Books to read to them
  8. Something for them to go down to surgery in
  9. Something to get changed in after surgery
  10. soft snacks, milk, water for afterwards (as long as cleared)
  11. Sling or pushchair to comfort baby/transport
  12. Comforting blanket

During the operation

The hardest part for me was walking away once they had put my little boy to sleep! I didn’t want to go, I didn’t want to leave him and it was emotionally challenging. However, the best advice I was given was to get off the ward so you aren’t clock watching. We went down to the café and had a drink and some food to keep our strength up. Then we went to get my little boy a balloon for when he woke up. After that, though, I knew I needed to come back to the ward and sit and wait. This is where my headphones came in use as I listened to lots of calming meditations until the surgeon came to get me.

Holding on

After the operation

We were taken down to recovery after nearly 3 hours and luckily my boy was still fast asleep! Soon enough, he stirred and fed very quickly! Then sat up straight and wanted me to take him round the room to explore the pictures on the wall.

My boy back after his cleft lip operation

We then went back to the ward and he was hungry for lunch, which he wolfed down no problem. After that, we took him to the play room and he wanted to play. The doctor had to come and find us and said he was the fastest recovered baby to be in the playroom! All that worry and stress and honestly he was absolutely fine.

For a while, I really couldn’t see much difference in my boy’s lip. I was told to focus on your baby’s eyes as these won’t have changed. Eventually we did start to notice a difference but to me he was still my beautiful little angel – cleft or no cleft! His lip healed really quickly and we were very lucky that we didn’t have to have an overnight stay. In the weeks after his operation, everyone commented how you couldn’t even tell he’d had anything done at all.

Mum torment

Beyond the operation

It is very easy for me to sit here and tell you not to worry when you receive a diagnosis because I am the other side of it. Please do trust me though when I say our babies are more resilient than we give them credit for. Now, looking back at baby pictures, it is hard to remember the cleft at all. We are still part of Cleft lip groups and go to organised events as it’s like being part of a large family. Please remember you are not in this alone.

Not long after his cleft lip operation.

Mummy the Fibro Warrior Top Tip:

  1. Take time to process medical diagnosis’ and come to terms with them. Use all the support that is available to you.

If there is one takeaway I’d like you all to remember today is that you have got this! You are strong! Remember you are worthy of support! Most importantly, you are capable to handle what life throws at you. I need you to know you are doing the best you can, your child/children love you just as you are and you are a warrior.

Until next time,

x

p.s. Is there anyone you know who has a child with a cleft lip? Could this article help them in someway? Do you have any hints and tips for my readers? I would love to know in the comments below.

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