Shock read: They had to cut off my baby’s scalp
Judy Mercer, 32, made a tough decision to change her daughter’s future
Gazing down at the baby in the cot next to my hospital bed, I’d never felt so happy. ‘She’s amazing,’ I whispered. It was September 2017 and, after a textbook pregnancy, I’d given birth to Holly, with my then-partner, David, by my side.
From the moment we met her, we were in love – and, like any new mum, I was drinking in every detail of her face, her perfect fingers and tiny toes.
But after just a few hours, I started to feel a bit of anxiety. ‘She hasn’t opened her left eye,’ I told the midwife. ‘Let me take a look,’ she replied.
When she couldn’t get it to open, she went to get a doctor. Soon, a medical team had gathered around, examining Holly, then she was subjected to countless tests. At just 48 hours old, Holly was referred to the Royal Victoria Hospital in Belfast to investigate what was wrong with her eye.
We were set up with consultants but were allowed to go home. Yet, while we waited for each appointment, I was so worried. By now, Holly had opened her eye slightly, but it didn’t alleviate my fears. I should have been enjoying being a new mum, but all I knew was that something was wrong with my baby, and so far, I didn’t have any answers.
After seeing an eye doctor at 14 days old, Holly was referred to a plastic surgeon, who sent us to a neurologist at Alder Hey Children’s Hospital in Liverpool.
To me, Holly was the most beautiful baby in the world. But as she grew, I could see that her face seemed to droop, as though her forehead and eyebrow had collapsed. But, otherwise, Holly was a normal baby. She sat up around six months, and loved Peppa Pig. She was able to play with other babies, and if I wasn’t going to appointments, I’d have been able to kid myself that any problems were a figment of my imagination.
But, in June 2018, when Holly was nine months, we were given a diagnosis. ‘Holly has unicoronal craniosynostosis,’
‘SOMETHING WAS WRONG, AND I DIDN’T HAVE ANSWERS’
the consultant said. It’s a rare condition where a baby’s skull doesn’t develop properly in the womb and means their head grows in an unusual shape.
‘If left untreated, it can cause severe developmental problems. It impacts visual development and will result in severe deformity of the forehead, eyes and nose,’ the doctor explained. It could also potentially affect Holly’s chewing, speech and lower face development.
As I listened to all this information, I felt overwhelmed, but I clung onto the fact that treatment was available.
Yet, as the doctor ran through the operation Holly would need, it took all of my strength not to cry. Over nine hours, surgeons would cut Holly’s head open from ear to ear, creating a wavy line over the top of her skull. Then they’d lift the skin and tissue up to get to the bone, remove the skull, place it on a side table and remodel her bone structure to create a new forehead. Then they’d replace the skull again and stitch Holly back together.
I couldn’t even speak, it sounded like something out of a horror film, and all I could think about was how my poor baby would cope.
I was terrified of what might happen – doctors said that brain damage would be a potential risk – but I knew that, left untreated, life with her condition would be worse. So we agreed to the op.
The date for the surgery was set for November 2018. The night before, I lay beside Holly, then one, hugging her. I just wanted her to be OK, but I couldn’t sleep for worrying.
The next morning, I carried Holly to the anaesthetic room, trying to hold it together so she wouldn’t see me scared.
‘You’re going for a little sleep now, but you’ll dream about fairies and unicorns, and Mummy will be here when you wake up,’ I promised.
The minute she was wheeled into the theatre, my resolve broke down, and tears streamed down my face. Back in the waiting room, I cried hysterically. What if something went wrong? What if my little girl came back different?
For the next eight hours, I could barely sit still. David and I waited in the family room, then in the cafe, but we didn’t speak. We went to a supermarket for a change of scenery, but checking my phone every few seconds only made time pass slower. All I could think about was each step of the op. At 11.30am, I knew they’d be removing her scalp and skull, placing it to one side.
The next few hours were torturous – then, finally, at 4.30pm, I got the call. The op had gone well, and doctors told me that Holly’s brain hadn’t been damaged.
In recovery, Holly was fast asleep, her head wrapped in bandages, but I was relieved to see she still looked like my little girl – I’d been so worried that she would be almost unrecognisable. Overnight, Holly’s head seemed to swell drastically, so much that she couldn’t open her eyes. And as she came round, she was irritable and groggy.
LITTLE BALLET DANCER
‘It’s OK, Mummy’s here,’ I said, holding her hand. The next couple of days were tough. Holly didn’t sleep as she was too confused and in too much pain. But, of course, being so young, she didn’t have the words to tell us, so I tried my best to make sure she was comfortable.
On the third day, the swelling had gone down in her face and Holly was able to open her eyes and get out of bed.
Doctors said it would take 18 months for Holly’s face to ‘settle’. But, already, I could see the difference.
On 5 December 2018, we were discharged, and within a few more days, Holly’s swelling had gone down. She was too little to understand what was going on, and really, she still is.
Now, at three, Holly is such a cheeky girl. She’s reached all her milestones. She loves dancing, and before lockdown, she’d just started ballet classes.
Sadly, David and I have now split, but we are committed to our girl.
Holly will need surgery when she’s eight or nine, to move her jaw. Her current jaw placement means she’ll struggle with some speech as she gets older, and she can find it difficult to eat and drink. I’m so proud of my little girl. She’s been through more than some people go through in a lifetime, and even though there is still more to come, I’ve no doubt she will be just as brave and just as strong as she has been since the day she was born.