Any parent or carer in the cleft community will have vivid memories of their child’s cleft surgeries, as well as all the worries that these bring. One year on from her daughter’s cleft palate repair surgery, Rebecca remembers the lead up to the operation as well as the unique stresses brought on by the Coronavirus pandemic.
Rebecca and Nina’s Story
A year ago today I was walking around the park with my daughter and my husband. She was giggling and smiling and we looked at each other and I had tears in my eyes and we said, ‘she has no idea does she?’
Nina was born with a cleft palate, which meant she had problems breathing and feeding and hearing. She needed surgery to repair the cleft as soon as possible so it wouldn’t affect her speech.
We knew that the surgery was the very best thing for Nina but also that it would be painful and hard and upsetting. She was 9 months old and so tiny and vulnerable and perfect. And she would have to go under general anaesthetic and we would all have to go through recovery, which meant sleepless nights, angel delight, four nights in the hospital and a lot of horrible attempts to give her pain relief.
This was during the height of Covid so her operation had been delayed and we only had a couple of weeks notice and suddenly it was the 20th of August. We had to self isolate for two weeks before and after and only one parent could be in the hospital with her. How do you choose that? Who sits at home and worries and cries and who sits in the hospital and worries and cries? Who was going to be there when she woke up or when it hurt or when she was confused because she wasn’t at home? Sam has a medical background and I’m terrified of hospitals so it made sense for him to be there in case he had to make any medical calls alone (which he did).
We had to self isolate for two weeks before and after and only one parent could be in the hospital with her. How do you choose that? Who sits at home and worries and cries and who sits in the hospital and worries and cries? Who was going to be there when she woke up or when it hurt or when she was confused because she wasn’t at home?
We switched over in the car park to give each other a break or a coffee or a hello. I paced the ICU ward with her in her pram for hours in the middle of the night because she just wouldn’t settle. She needed a nose stint to breathe and she was scared. The cleft team were amazing and doted on gorgeous, friendly Nina. When Sam was with her she enjoyed watching the cleaner mop the floors so much he came back to do her room again for her. Everyone wore masks at all times, and I’ve never sanitised my hands so often or waited for an empty lift. Because it was during Covid, everything was different and everyone was scared.
We were desperate to come home and be together and we couldn’t. For days. And it was so hard being apart.
But she has recovered. She has healed. She barely has a scar and she demolishes food with such joy and enthusiasm you wouldn’t know there had ever been a problem. A lot of people say that about Nina: ‘oh you couldn’t tell she was poorly’. And of course, that’s meant with good intentions, but she has been through so much, so young and it’s been so tough.
A year later she’s the most wonderful, funny, kind, generous, fearless one year old. She is a delight. She loves painting and cats and monkeys and ice cream and she loves seeing other kids. She is so confident and brave and strong and amazing but she still gets night terrors sometimes. And she still has hearing issues because of her cleft and there might be further surgeries or issues and we’ll deal with them when we come to them.
A year later she’s the most wonderful, funny, kind, generous, fearless one year old. She is a delight.
But hopefully, we can do it together. And we got through this, so we can get through anything.
Thank you to Rebecca for sharing her family’s cleft journey so far!