My daughter ‘H’, was born with a cleft palate. You can read part one of our story here.

We had lots of meetings with the cleft nurse in H’s first 6 months. Once we left the hospital, the nurse came out within a day or two to explain what would happen now.

On 6th April 2006 the cleft nurse came out to discuss the surgery, which I was also given a date for – 25th july 2006.

I was told by the cleft nurse to start weaning H when she was 3 months old. I remember the health visitors face at the doctors surgery when I told her that I had started weaning H already, it was a picture! sshe started to tell me that that was too early, but I interupted her and told her that I had been told to do that by the cleft nurse, that soon shut her up!

In between all of this I soon got used to feeding H. I knew the right amount of pressure to put on the bottles now and felt alot more confident in feeding her.

I remember when she was sick for the first time ever, it scared me so much. She had lots of milk and wouldn’t wind! I sat her up and tried again to get the wind up and then she was sick everywhere.

Because of her cleft, most of the sick came out of her nose, she panicked as she couldn’t breath until I cleared it away. Once I had seen her like that I was then scared to put her to bed alone in the bedroom, so would leave her in her bouncer next to me in the living room.

I would put her to bed once I was ready to go to bed, and had her crib right next to me. I even slept with my hand next to her so I could feel her breathing.

If I woke in the night, I would automatically put my hand on her clothes, gently on her face, to make sure she hadn’t been sick. This was my life for months, always scared she would be sick when she was in her crib.

Once I went back to work, when she was 3 months old, I got brave and started putting her into her crib before I went to bed. I knew that I had to start doing that to get her in to a routine.

I don’t even know the reason for it, but I went in to the room one night to find her being sick in her crib, she was panicking again, I shouted for her dad to come in and I was crying, trying to calm her down, trying to calm myself down.

I then found it even harder to leave her in her crib- I would constantly be up and down to her!

I had a baby monitor and would sit with it pressed against my ear on the sofa so I could hear her. Despite my anxiety and worry, we soon got in to a routine and she was a really happy baby.

Leading up to the operation I tried really hard not to think about it. I put it to the back of my mind which is very hard to do I can tell you! I was grateful to be back at work for that reason, as it was a distraction from what was going to happen.

The morning of her operation, we were up early, as she wasn’t allowed to have milk after 7am. I fed her, then played until it was ready to leave.

All the way to the hospital, I just kept talking to her, didn’t want to be quiet so I would have time to think. H was sick in her pushchair just as we were getting off of the bus. I then started thinking that she was going to be really hungry as she wasn’t allowed any more to drink.

Once we arrived at the hospital, we were shown to the play room, as there was no bed space for us until later.

I sat in there, playing with her, looking around at the other children, some younger, some older and felt so sad. It wasn’t just children for cleft repairs there, it was for all sorts of operations.

A nurse came to us to put some ‘magic’ cream on H’s hands, ready for the operation.

H was fine with this and carried on playing. I think I got a lot of my strength from her that morning as she just went along with everything bless her.

At about 10am we were shown to a bed. The cot looked so big, with its high sides. It looked like a mini prison!

There was a couple opposite with a baby who H’s dad recognised, he went to speak to them and there baby was due to have his lip repaired that morning. I will never forget his name, damien.

It’s weird the things you remember isn’t it?

I took H back to the play room so we could have some fun and distract her from the comings and goings in the hospital.

A nurse came and got us from this room and said that it was time for H to go down for her operation. The emotions I felt right then were so intense. I gripped her so tight on the way to the operating room.

Only one of us could go in with her whilst she was put to sleep, so I went in.

By now she was a little upset where she was getting hungry. She started crying quite a bit when they tried putting the mask over her face, to put her to sleep, which I found really hard, it broke my heart!

When I felt her relax in my arms, I didn’t want to let her go. I had to lay her down on the huge bed and I was told to say goodbye, what a thing to say to a parent who has just had her baby put to sleep in her arms. I will never forget getting told to say that, why not good night?

As I walked away I broke down. I found it hard to stand up and grabbed her dad as I walked out who was in tears as well as he had heard her crying from outside.

We just walked. I didn’t know what to say, what to think, or what to do.

In the end we left the hospital grounds, went to the pub opposite and sat and had a soft drink and I cried some more. I remember people looking at me as I was so upset.

We finished the drink and walked again, decided to go in to the town centre which was a 5 min walk away. As we walked back in to the ward, a nurse was just getting off of the phone, she walked over and said H had just come round and we could go to her. I was so pleased, but also scared.

As we walked in to the recovery room, she looked so small, with tubes coming from her but I have never felt so pleased to be able to hold her in my arms.

It looked so sore around her mouth where they had to hold it open to do the operation. I was prepared for that as we had been told about it prior to it.

It was horrible to see our ‘happy’ baby looking so serious. I didn’t want to let her go after that, was so pleased to have her back. I remember when we got back the little boy opposite was feeding already so I felt so positive then, thinking H would also take to her bottle quickly.

I was so wrong! She refused it, didn’t want it at all.

She would get really upset every time I tried, so she was fed through a tube up her nose.

She got quite poorly too, had really bad diarrohea and became dehydrated. I would change her nappy and literally within minutes it was full of coloured water.

We were transferred to our own room were in there from the Tuesday morning and didn’t go home until the following Monday.

H started feeding from a bottle on the Sunday and I was so relieved knowing that would mean we could go home soon. I hated having to feed her with a tube.

On the sunday before we were allowed to take her home. She was the only child on the whole of the ward. I remember that the sunday was the first time I saw her smile. It was so lovely to see her smile. I cried, again!

She had to wear socks on both hands as before her operation she sucked her thumb.

She coped really well with that,not being able to comfort herself in that way anymore. She had to keep them on for a month.

When we left the hospital we had to go back to pureed food, nothing hard like toast (one of her favourite things to eat) and it was like this for a month, to allow her mouth to heal.

I was amazed at how quickly she was happy again, considering the pain she must have been in! She was always smiling.

I had 3 weeks off work with her and couldn’t get over how good she was being. I had been expecting to have a grumpy little girl, yet instead so soon, she was her happy smiley self.

This operation was’t the end to H’s cleft palate operations. She also had grommets fitted when she was a year and a half.

Having her put to sleep was no easier. This time I stayed at her bed as it was a shorter operation.

The grommets helped H’s speech which she had had problems with prior to her operation. Before she had them, she was saying ‘mamy’ for baby and ‘mye’ for bye, but within a week, this had turned to baby and bye.

It was so good to hear that and she was so proud of herself. Her speach came on in leaps and bounds. She was a very confident little girl. Which always surprised me as she was constantly in and out of the hospital for appointments, hearing tests etc.

Since she was 2 ½ years old, she has been having speach therapy regularly as her speach therapist was concerned that she could hear something.

In all of my experience dealing with medical staff and language therapists, I would say that I wish they would speak in a way that you can understand!

When you are being told things that are worrying, not alot sinks in!

I was warned that another operation may be needed in the future. Her therapist was confident they could fix it with therapy though, so that gave me some hope.

Last year she started having therapy weekly as she was getting to the age where she would be going to school. Luckily she loves her speach therapist and loves going to see her.

This year things have moved on a bit, her therapist still had concerns that there may be a small hole in her palate so put her name down to have an x-ray of her palate.

I explained this to H, told her what it would be doing and what she would have to do. We practised at home, she would sit on a chair and talk in to a hairbrush (she had to speak in to a micro phone for the xray) she thought that this was fun, which I wanted her to see it as -a bit of fun!

I rememember the morning of the x-ray she had been chatting non stop. As soon as he got out of the car, she went reallly quiet, started saying she didn’t want to go to the hospital.

I explained again that it wouldn’t hurt, that it would be ok and that I’d be with her.

Once we got there, she relaxed a little.

When she saw the x-ray machine, she got nervous again. It is a great big machine that she had to sit in the middle of and it looked scary.

I stood behind her so she would sit on the chair.

I could have cried standing there, she was so good, said everything she was asked to say and loved seeing her palate on the screen.

I had a phone call from her therapist a week later and got told that they hadn’t been able to see enough from the xray and that H would need to go back and have a camera up her nose, which is what I had been dreading.

I sat her down and explained this to her, said it was tiny, and would be on something like a piece of spaghetti. Again, she took it in her stride, such an amazing little girl.

The morning of this, I was finding it hard to keep it together, but knew I had to for her.

All the way there on the bus, I kept telling myself to stop being so silly, it was her going through it and look how brave she is being.

Once we got there, the surgeon who had done her original repair was there to put the camera up.

He was saying how well she had done considering how small her palate is, saying she has done so well to come as far as she has without further surgery already, which made me feel so proud.

He had a nurse running round the hospital looking for chocolate buttons for H which made her smile.

Chocolate for breakfast! She loved it.

They had to squirt a spray up her nose to numb it for the camera (which is why the chocolate was needed) as soon as this was sprayed up her nose, she started crying.

I got told that it tasted horrible and she was so upset. I found it really hard to keep the tears back, wanted to scoop her up and take her away from it all.

She calmed down once the chocolate got rid of the horrible taste.

Then for the next bit, the camera. He put it up, easy peasy I thought. Then she suddenly got really upset, crying, sobbing. I bit my tongue so hard, to stop my tears coming, was horrible seeing her like that.

I managed to hold it together, reminded her that she was going to see her throat on the tv, and how cool was that, none of her friends had seen that ans she calmed down.

The surgeon was amazing with her, talking to her, pointing out the bits in her throat, when she spoke, he showed her the screen and said ‘look, can you see the bubbles you are making’ (snotty nose and tears lol) and one popped on the camera which made her laugh.

After it was taken out, more chocolate was needed and I had a happy H once again.

The surgeon then sat me down and explained that another operation was needed.

I had been ready to hear it, but actually hearing it was harder than I thought it would be.

Again, my tongue was bitten to stop the tears. He explained a little about it, saying her first repair would be opened up and then done again, pulling more muscle across.

On the way to her school on the bus, I was sat next to her wiping my eyes constantly, not wanting her to see the tears fall, wiping them away before they got to that stage. She was asking me about it all so I sorted myself out and spoke to her.

I began explaining what it would mean, that they were going to fix her mouth again and that the words she has trouble with now would be easier for her to say once it is fixed (can’t pronounce ‘s’ and ‘f’ without trying really hard) She was really pleased to go in to school, eager to tell them all about her morning at the hospital.

When I picked her up she was telling me all about her day. I carried on as normal, got her dinner ready, gave her a bath, put her to bed, read her a story.

As soon as my partner walked in from work I cried and cried. I couldn’t stop.

Just the thought of having to go through yet another operation with her, and now she is at an age that she can tell me what it is like.

H is now on the waiting list for her operation. She asks about it every now and then, but I don’t want to go in to too much about it until we have a date through.

I was told it would be about 3-4 months and that was a month ago, so its getting closer.

I’ve been on an emotional rollercoaster through all of this. Up and down and eelings of guilt- I blamed myself when I first found out she had a cleft and I still do now.

If I sit here and think about it, I feel like I done something wrong. Ithink if only I had of done that, or done this etc.

I wish I could go through it all for her, just so she doesn’t have to go through all the pain again.

When I have to correct her speech she gets so cross with me and I Ihate having to do it but I know its what I have to do.

I feel alone, even though I have a wonderful partner. He is amazing and is always there with a cuddle.

H is so brave and fantastic, she is so bubbly and confident. I look at her and feel so proud, she has come through so much.

I’m sat here in tears writing this, it has taken me two attempts to finish it! I feel scared, numb, worried, proud, so many and all at the same time.

I’m not looking forward to her next operation, I know I am going to find it hard going down to that room again with her so they can put her to sleep, knowing I’m going to have to walk away from her again.

I also feel so lucky. H is a very special little girl, she has gone through so much and is still such a confident little girl. I also feel lucky as I think about others that have had 10 or more operations by now, so have to keep reminding myself of that.

I don’t think I would be able to get through this as well as I do without the support of my partner, he is amazing. H loves him, which is great. It is definitely something you need a good support group with, don’t think you could get through it alone.

It annoys me a little when I tell people that she was born with a cleft palate and they look at her and say ‘well you would never know.’

I then have to go on to explain that it isn’t a cleft lip she had, but her palate.

I know I was the same, but I just think that it should be something we should be made aware of.

I don’t think I have spoken to one person who isn’t something to do with clefts that has known what a cleft palate is, they automatically just think her repair is amazing as they can’t see it.

No-one really notices her speach, as its only something you notice when you are told about, to someone in the street it would just sound like any other child talking. It’s only when you listen properly that you can hear it.

I wrote this guest blog piece to highlight Clefts and to share our story with other parents who are going through, or about to go through the same thing with their child.

Support and information for parents of children with Cleft lip & palates can be found at here.

Antenatal support can be found here.