When my daughter Renae, my firstborn, was 5 months old she spiked a fever. By that evening, she was having trouble breathing — the color was gone from her face and I could see her skin tugging in around her ribs. At the hospital the doctors noted the red spots on her body and diagnosed her with measles.
This was 2013, and Manchester, England, where we lived, was experiencing a measles outbreak that resulted in more than 1,000 suspected cases. A 1998 study by a British doctor, Andrew Wakefield, linking the measles, mumps and rubella vaccine to autism had caused vaccination rates to plummet. The study was later retracted and Mr. Wakefield stripped of his medical license, but the damage had been done. In 2013, most of the cases were among school-age children whose parents had refused to give them the vaccine, which is not compulsory in Britain, or among babies too young to be vaccinated, like my daughter. (The first measles vaccine is usually given at 1 year of age.)
While I was concerned about Renae, I wasn’t panicked by the diagnosis. At the time, I thought of measles as being like chickenpox. And I knew she was in the right place, in the hospital. Doctors were able to stabilize her breathing quickly, and her fever was responding to Tylenol. Renae would feel poorly for a bit, and then get better.
And that’s what happened. Within a week she seemed back to normal. What I didn’t know was that measles can cause long-term complications. A child can seem fine while the virus slowly replicates in her brain, poised to exact a terrible toll years later. Because both Britain and the United States are confronting outbreaks, I am sharing my story. Parents should know just how dangerous this disease is.
Renae was a happy and bubbly child. She was early to talk, and speaking in full sentences well before she turned 2. She could write her name at 3. When she was 8, she was so proud when she brought home her report card, which said she read at the level of a teenager. She loved arts and crafts and books — every day after school she’d ask me to read with her. She squabbled with her two younger siblings and also adored them. You could never really scold Renae because if you did, she’d just find a way to make you laugh.
It was in the spring and summer of 2023, when Renae was 10, and I was pregnant with my fourth child, that we got the first hints that something might be wrong.
Renae’s handwriting, which had always been exceptionally neat, got a bit wobbly. Renae was never an athletic kid, but when I attended her school’s Sports Day, she wasn’t participating at all. She seemed a bit off balance. She was growing up quickly. She had just started her period. The school had called to say she was holding hands with a boy in her class. So when her personality changed and she became more snappish, I didn’t think much of it at first. She was excited about the new baby, helping set up the nursery.
In mid-June, I got a call from her teacher. Renae had had a seizure — could I come straightaway? By the time we got her to the hospital, she was pretty much back to herself. “Oh, my God, did it happen at school!?” she asked, mortified. We were referred to an epilepsy clinic.
A week after that, she had another seizure. And then several days later, while lying in bed with a friend, another one. She was admitted to the hospital, where she received an M.R.I. that showed mild brain swelling. The doctors told us that this can happen sometimes, that maybe she had a recent infection, and it often resolves on its own. They started her on an anti-seizure medication and, since it seemed that she was getting better, released her.
But toward the end of the summer, she told us she saw things that weren’t there. I wondered if it could be a side effect of the medication, but she had also started moving very slowly, almost robotically, and often seemed confused. We took her back to the hospital, where another M.R.I. showed the swelling in her brain had become much worse.
The doctors put her on an antibiotic drip. They did lumbar punctures, collecting cerebrospinal fluid from between her vertebrae. They hooked her to a machine that took the blood out of her body, cleaned it, and put it back in.
She was rapidly slipping away. The nurses tested her strength each day, and each day she was getting weaker. I remember giving her a bath. She said, “Mom, get in.” So I did, and I brushed her hair. When she tried to get out, she fell. After that, we started using a wheelchair.
Renae would ask me, “What could it be?” I told her once the doctors figured it out, they could make her better. Her voice got weaker and she started sleeping more and more.
Within a couple weeks, Renae had stopped talking and eating. Her last food was cotton candy and an Oreo doughnut, which she always loved. She was transferred to the intensive care unit and given a breathing tube. Though she couldn’t speak to me, she still squeezed my hand when I talked to her. I worried she could overhear us talking about her condition, and wondered how scared and confused she must be.
We got the diagnosis when one of the tests of her spinal fluid had come back from London. Renae had subacute sclerosing panencephalitis, a rare complication of measles. The doctors told me it was fatal, and there was nothing else they could do.
I ran outside onto the hospital grounds and sat on a bench. I looked down and at my feet was a stone that said, “Keep smiling” — it’s a phrase Renae used to say to me.
