My daughter, who I will call H from now on, is due to have another operation in just 2 weeks. This will be her 4th operation so far and I?m hoping this is going to be her last.
Her first operation was when she was just 6 months old. When she was born, I remember looking into her mouth and seeing a larger hole than I was expecting to see, but I didn't know anything about clefts at that stage so thought nothing of it. It wasn't until one of the midwives told me that she had a cleft palate, and no, this isn't something you can see on her face, its in the mouth. If you put your tongue to the back of your teeth, run it along the roof of your mouth, when you get to the softer bit, that?s the part of the palate that H had a cleft. Laying your small baby down on that big bed, kissing her cheek and walking away, you can't even begin to imagine how hard that is unless you've been through it yourself.
Her second operation was when she was a year and half old, this time it was to put grommets in both of her ears as she had glue ear in both and it was affecting her hearing and also her speech. Even though I?d been through it before, it didn?t' make it any easier and this operation was a lot shorter too, still didn't help. Its still the same, having to leave your baby in the hands of strangers.
Then her third operation was last year. Her speech therapist had referred her as she was still talking through her nose a lot, and you could hear the turbulence of air at the back of her throat. Before the operation was booked in, she had to have a camera up her nose, she cried when it went up her nose, I bit my tongue very hard to stop myself crying with her. Instead I made myself sound all positive, pointing to the bubbles she was making for the camera to pop ? she got to watch it on a screen, then suddenly she was smiling, laughing as you could see the camera popping the bubbles. Her operation was booked. I made it a positive thing for her, never let her see me cry and trust me, there were a lot of tears shed from me. You see, her other operations, she had been a baby, babies cry, so hearing her cry afterwards, wasn't so hard (don't get me wrong, it was hard, but I found it easier to cope) this time around, I knew she was at an age where she could talk (she was 5 years old) and she could tell me if it hurt, how she was feeling etc. I talked to her about when I had had an operation and said that I had managed to count to 10 before I fell asleep, that was it, she was determined that she was going to beat me. As I went in to that room with her, had her in my arms as we looked for fairies in a book, she had a look of determination about her. H knew she had to beat me, and she did. H got to 12 before she fell asleep. This made me smile and I couldn't wait to tell her. Then I looked down and she seemed so small, my big 5 year old girl was so small! I walked away with tears in my eyes. Once we got home from hospital the next day, it was time to give her some of the medicine that the hospital had given her. In the hospital she had been really good, had taken it easily. For me, at home, not so easily. The only reason was that she didn't like the taste. I went to give her a spoonful and she cried, she screamed, she kicked, she wiggled to get away. I bit my tongue so hard, I wasn't going to let her see me cry. I talked to her, I hugged her, none of it worked. Finally she let me give it to her. I was so worried that she wasn't going to take it, I knew she needed to take it to help her recovery and for the pain. Once she was happy and settled again, I told her that I was going to the toilet. I went to the bathroom and I cried, I cried like I?ve never done before. I fell to the ground, unable to support myself, I sobbed, I was shaking. My little girl was in pain, and there was nothing I could do, I felt so helpless.
Then at the end of last year I was told that she may need to have another operation. This time slightly different as there was nothing more that could be done with her palate as it is quite a small palate and H has done so well to come as far as she has considering how small it is (this is what the surgeon told me) which obviously made me feel very proud of her, again. This beautiful little girl just keeps amazing me.
The camera had to be done again, this time she didn't cry, although I could see that she so desperately wanted to. I bit my tongue, which seems to be a recurring thing for me and made myself sound all positive. I pointed to the screen and spoke about what happened last time, could she see her mouth yet, were there any bubbles, anything to stop her (and me) from crying and getting upset. H was again, amazing. There were no tears and she loved seeing her mouth on that screen again. Then the operation was set, we had a date.
I've been pretending its not happening up to now, trying to forget that its coming. But now, I can't. Its just 2 weeks away. Every time I?ve spoken to H about it, she is excited, she's looking forward to playing in the play room again. This is how I want it to stay for her, I don't want her worrying, stressing about it. I do worry that the memories of her one last year will come back to her, as its so recent. Have my fingers crossed that they don't. I'm worried that as it gets closer, she is going to start saying she doesn?t want to go to the hospital, doesn?t want to have it done. Which obviously, you couldn't blame her for. If this happens, I don't know how I will cope, I just know that I?ll get through it like always. I am keeping this all positive for her again, not letting her hear my worries, not letting her see my tears. They are for when she is safely tucked up in bed, fast asleep.
I'm dreading having to leave her in that room again, to leave her with strangers again, although it does help that the surgeon is the same one who has done all of her operations and he is an amazing man, so good with her and with me for that matter. But that aside, its not going to make it any easier that my baby, even though she is 6 now, she is still my baby, is going to have another operation, I?m going to have to sit with her as she is put to sleep, I?m going to have to walk away from her and leave her there. This is what is killing me inside. That?s the bit that is so hard, the walking away from her when she is asleep. I'm also worrying about the after bit, will it be a different pain, will it hurt more this time. The operation is going to be on the back of throat this time, I can't remember what the medical term is, but the way they have described it to me is that she is going to have a speed hump of skin at the back of her throat, so that the palate can then seal the mouth when it needs to. This in itself is worrying me, its in her throat. What if it gets infected, what if it swells up, what if she struggles to breathe once we're home. I've been told that she could snore more than she does now because of it. I'm kind of hoping she does, because that means I can hear her breathing.
I still have a baby monitor in her room, still have to listen to her breathing before I can leave her at night time and go to bed myself. I think this is because of when she was a baby, before the cleft was repaired the first time. I had put her to bed, and for some reason I felt the need to check on her and I?m so thankful that I did. I went in and she wasn't breathing. The reason for this is because when she was sick as a baby, because of the cleft, the sick would mainly come through her nose, making her panic and stop her breathing for a short while (seconds that seemed a lot longer) since then, I haven't been able to get rid of the monitor.
My little girl is an amazing little girl, who makes me so proud to be her mummy. H has been through so much and it doesn't seem to faze her one little bit. She is a confident and happy little girl and I love her so much. Even with all of this, I wouldn't want her any other way. Being born with a cleft palate has made her even more special.