Real Life My baby had a stroke
When Alice Comben noticed her daughter was a bit off colour, she put it down to a bout of tonsillitis…
As I watched my daughter Bethany, 14 months, shuffle across the living room floor, I grinned to myself. ‘Wow, look at you!’ I gushed. Most parents might have expected their babies to be well on their way to walking by now but here I was, praising my little girl for crawling only a few metres.
But Bethany isn’t a late developer. And it’s not the first time I’ve watched her hit her milestones, like learning to crawl or roll over. She’s overcome things no child her age should have to endure, and can now do things I was once told she might never be able to do again. And while it might be the second time I’ve seen it all, it’s all the more precious when I look at how far my daughter has now come.
My pregnancy with Bethany went as smoothly as my husband Phil, 32, and I could have expected. As soon as she was born, on 7 July 2016, we were besotted, and as a new mum I spent the first year of her life constantly enthralled, even with the sleepless nights and nappy changes.
I’d been lucky enough to take a whole year of maternity leave, and I watched with pride as she started to roll over, then crawl, then pull herself up and shimmy along the sofa. The 12 months flew by and before long, I was preparing to go back to work. I wasn’t looking forward to leaving Bethany behind, but I was looking forward to reconnecting with my colleagues and being back in the office.
Plus, I was fortunate enough to have the help of both mine and Phil’s parents when it came to childcare. A month after I’d restarted my job, our new little family had fallen into a familiar routine. As I did every day, I woke up, got myself ready for work and dressed Bethany. Then I put her in the car and took her to my parents’ house.
But on the morning of 7 August 2017, I got the phone call of my worst nightmares. ‘I’ve had to call an ambulance,’ my mum Janet said. She explained that Bethany had been napping when she’d let out a piercing scream. ‘I ran straight in to check on her, but she wasn’t moving.’
‘Is she OK?’ I gasped, running straight to my car. ‘We’re going to A&E, meet us there,’ Mum replied, her voice shaking. I rushed to Maidstone Hospital, calling Phil on the way, my heart pounding. But the sight of our baby lying helplessly on a bed reduced me to tears.
Devastating news
After Phil arrived, we both sat with Bethany, holding her hands and stroking her hair. ‘Mummy and Daddy are here,’ I whispered to her.
Bethany went for a scan, but the seriousness of the results meant she needed to be transferred to King’s College Hospital in London. After more
‘i got the nightmare phone call’
tests, a doctor came into the room, but his diagnosis was the last thing I’d expected to hear. ‘Bethany has had a stroke, he said. ‘She’s suffered a bleed on the brain caused by an infection.’ He told us that the infection had caused Bethany to develop a small hole in her heart, which had then allowed bacteria to travel to her brain via the blood.
I desperately racked my brains, trying to think whether Bethany had shown any symptoms in the previous week. I remembered she’d had a temperature, been a bit lethargic and was reluctant to eat or drink anything. But we’d taken her to a doctor, and we were told it was just tonsillitis. Even so, that morning, she’d seemed absolutely fine. To help with her recovery, Bethany was then transferred again, to the Evelina London Children’s Hospital, that specialised in both neurological and cardiac conditions. Thankfully, Bethany made good progress and we were allowed to take her home after 11 days. But five days later, I was changing her nappy on a mat on the floor when she rolled over onto all fours. Phil picked her up for a cuddle, but her tiny body started convulsing and she was sick.
I dialled 999, panic rooting itself deep in my stomach. When we arrived at the hospital, Bethany was given a series of tests and scans. But it only brought more bad news. ‘I’m afraid we’ve discovered an aneurysm. ‘It’s a bulge in the blood vessel in her brain,’ a neurosurgeon said.
He said it could burst at any time, and if it did it would be fatal. ‘Bethany needs brain surgery. But there are big risks,’ he added. ‘There’s a chance she could be paralysed down one side.’ There was no other choice – without the op she would die. For the next few hours we paced up and down in the park outside the hospital as Bethany underwent surgery. Finally, we got a call to say the operation was over. ‘The surgery went well,’ we were told. ‘Bethany still has movement in her left side.’
As Phil and I sat by her bed, waiting for her to come round, I talked to her, reading her stories as she drifted in and out of sleep. The moment she stirred, we frantically scanned Bethany’s body, looking for any indication of movement. Sure enough, she was moving both her arms and legs. But she had been left with significant weakness on her left side and couldn’t sit up. She’d developed hydrocephalus – fluid on the brain – and needed two lumbar punctures to reduce pressure in her skull. She spent four weeks in hospital, but just as we were preparing to take her home, Bethany caught chicken pox.
Phil and I barely left the hospital. We took it in turns to sleep by Bethany’s bedside, while the other went back to the Ronald Mcdonald charity house we were staying in for a shower or clean clothes. We were close to breaking point.
Another week passed, and my brave little girl finally started to improve and we could take her home. But the transition was much harder than I’d expected. It was awful watching her lying on her back, unable to move. We worked with a physio team to help build her strength back up, and in October 2017, eight weeks after Bethany’s first stroke, our patience was finally rewarded when she sat up all by herself.
Amazing medical staff
My heart burst as I watched my daughter support herself unaided for the first time since we’d rushed her into hospital. Now, Bethany can shuffle short distances on her bottom, rolls over from her tummy to her back and has started crawling again. It means I’m getting to watch her hit all her milestones again, but this time it’s extra special, because I know how much she has been through to get this far.
Phil and I are so grateful to our wonderful family and friends, and all the amazing medical staff who cared for Bethany. Without them, she might not be here today.
Whenever I tell anyone that Bethany has had a stroke, I’m met with shock and disbelief. I had no idea something like this could happen to someone so young, and since our own family’s experience, I’m determined to raise awareness of childhood strokes. That’s why I’ve taken part in a Stroke Association Resolution Run, which supports stroke survivors and their families as they rebuild their lives. ✱ For more information, visit stroke. org.uk/fundraising/resolution-run
‘we were close to breaking’