Awareness Week 2018: Louise’s Story

May 4, 2018

It’s Cleft Lip and Palate Awareness Week! At CLAPA, we believe every smile tells a story, which is why we’re sharing stories around a different part of the cleft journey every day. Please help us spread the word and make everyone in the UK #CleftAware!

Day One: Diagnosis

For three new families every day in the UK, this is the first step of their cleft journey. The moment they find out things will be different to what they expected, and that they’ll have to find a way to cope with all the challenges that lie ahead.

In a survey of over 1,200 parents, we asked what they were most worried about when they got their child’s diagnosis, aside from their child being healthy. The answers will be familiar to any parent.

1. How will I be able to feed my baby?

Babies with a cleft often can’t form a ‘vacuum’ with their mouths, so trying to feed from a breast or regular bottle is like trying to drink through a straw with a hole in it. Feeding well and gaining weight is a priority for any newborn, so what is it like when your baby needs extra help? Or when the feeding plan you’ve dreamed about doesn’t work out? Check out our story on feeding on Monday 7th May to find out more.

2. How will other people react to my child looking or sounding different?

Sharing photos of your gorgeous newborn on social media is an exciting part of having a baby for many expectant parents, as is showing them off to others at every opportunity. But what if you had to brace yourself for stares, misguided comments and even cruel words? And once your child grows up and has to face the world, what if others are unkind? Louise’s story below illustrates how difficult this can be for expectant parents. This Awareness Week, please share our stories to help everyone understand how far a little empathy can go.

3. How can I hand over my child to the surgical team?

At three months old, your baby has started to smile, and to you it’s the most beautiful thing in the world. But you know that any day now you’ll have to hold them as an anaesthetic mask sends them to sleep, and hand them over to a team who will change the way they look forever. Babies with a cleft will have at least one surgery before their first birthday, and often there are many more to follow. Read more on Tuesday 8th May with our stories on repair surgeries.

Louise’s Story

After finding out our first baby had a genetic syndrome at our 12-week dating scan and then losing our baby at 14 weeks, we were delighted to find out we were expecting again so soon. This was quickly followed with worry and stress at the thought of the same thing happening to us again. To help my anxiety, we booked an early reassurance scan at 10 weeks and were over the moon to find everything looked okay. The 12-week scan came and went without any drama. We were so excited.

We booked a private gender scan at 16 weeks as I am a very impatient person and just couldn’t wait to find out whether we were having a little boy or girl. After making me jump up and down, our baby finally uncrossed their legs and we found out we were expecting a baby boy! The sonographer scanned his face, so we could take a picture home. It was then I noticed what looked like a line on his lip.

I didn’t mention the line in case I was being ‘silly’ but I did ask if everything was okay from what she could see. She reassured me that everything looked fine to her. Once we were home that day, I became obsessed with looking at scan pictures to see if they also had this ‘line’. If I am truly honest, I knew then that our baby boy had a cleft lip. I tried to convince myself I was being silly, and that the baby was still developing and this was normal.

We then got our date for our 20-week anomaly scan. I didn’t tell anyone (including my husband) about how I was feeling as I didn’t think anyone would believe me. The scan date arrived, and although I was excited to see our baby again, I was so scared they were going to tell me something was wrong. When the sonographer scanned his face and noticed he had a cleft lip and probable cleft palate, I burst into tears and said “I knew it”.

We were taken to a private room where it was explained that it was very likely that our baby had a cleft lip and we were being referred to the RVI to meet a Cleft Nurse Specialist and have a more detailed scan to check if there were any other anomalies.

After what seemed like the longest four days of my life, we were back at the same place where we found out we had lost our first baby.

They scanned me and advised us everything was okay, but our baby boy did in fact have a cleft lip and palate. We met our Cleft Nurse Specialist (who is amazing) and they answered the questions we had. This helped ease my husband’s worries but it made things ten times worse for me. We were offered an amino but declined (my husband’s request). We were told to come back in 6 weeks’ time to check our baby was growing at the rate he should be. He was! He was growing perfectly fine.

I was hoping this scan was going to stop my anxiety. It didn’t. I’m a born worrier and I overthink every situation. I was obsessed with looking at before and after pictures of babies born with a cleft, doing research and examining all my scan pictures to see if I could see how ‘bad’ it was going to be. My husband and close family were amazing and were such a good support network but nothing could help with my worrying.

I hated my pregnancy, hated everything about it. I couldn’t get excited about anything. I delayed decorating his nursery and I hate to admit this now but every item of clothing I bought for him was 3-6 months onwards. I didn’t believe I would do much with him before his lip surgery. I was very worried what others were going to think and whether they would blame us.

I couldn’t tell anyone how I truly felt as I didn’t think anyone understood. Every day was a massive struggle for me. Everyone was so excited to meet him, but I wasn’t. I hated feeling the way I did. I felt like I wasn’t going to love him and I was really scared that I was going to suffer from post-natal depression.

Fast forward a horrendous 18 weeks on (and an exhausting 49 hours of labour) and I had given birth to our beautiful baby boy, Billy Alexander.

I can admit this now, but I didn’t feel that overwhelming love when I first met him. That was nothing to do with this lip, I genuinely thought he was gorgeous. I think, after all the stress and worry, I was just numb and exhausted. Once we were home, we had so many visitors who just loved him and I couldn’t stop taking pictures of him. I truly believed he was the most gorgeous baby I had ever seen. I will admit now, though, I did often look at his lip and think it was wide and imagined what he would have looked like without. I was very anxious taking him out in public as people did stare and it made me cry every single time. I think looking back this might have been mixed with a bad case of baby blues.

I woke up one day and everything just seemed different. I felt happy and stress-free, for the first time in a very long time. Billy will be one-year-old in a couple of weeks and I can’t even begin to describe the love I have for that little boy.

He is our world and I am so proud of him. He amazes us every single day. He is not even one yet and already has two surgeries done and dusted. He bounced back from both surgeries so quickly, like it was nothing. He charmed every nurse on our ward and just wins everyone’s hearts.

We have a long road ahead of us, but I know he will smash it.

Billy Alexander is our hero.