Rachael Fleming, 38, lives in Ellesmere Port on the Wirral with daughter Liliana, two, and son Leonard, 15 months. Trusting her ‘mother’s instinct’ about baby Lennie led to the shocking discovery that he had cataracts – a health concern that affects around three to four in every 10,000 babies born in the UK.
Here, the doting mum-of-two shares her story and explains how going with her gut feeling was the best thing she's ever done…
“There it was again. Leaning over Lennie’s cot, I noticed a little white fleck, right in the centre of his pupil. I was mystified. Was it a trick of the light? But as the days passed, it seemed to get a little bigger.
“Maybe I’m just worrying about nothing,” I tried to tell myself, as I scooped him up for a cuddle.
Lennie had passed his routine six-week check without a problem, and the doctors and health visitors all declared he was perfectly healthy. Nobody had any concerns.
He was my second child and my pregnancy had been difficult. I had undiagnosed gestational diabetes and my bump was really big. I could hardly walk, and by the time he was born, in January 2022, he weighed a whopping 11lbs.
Lennie was a big, bouncing, healthy baby! But back home, I couldn’t shake my concern about those white specks. Then he began having what seemed to be reflux attacks. Every now and then, he hunched his shoulders and brought his knees up, as though he had stomach pain or indigestion.
I described the attacks to the GP, who agreed it was reflux and prescribed medication.
But the attacks continued. They seemed to come in clusters and Lennie would open his mouth wide and scream. It was obvious he was in pain, and I felt so helpless.
The doctor upped his dosage but the attacks continued. Deep down, I felt there was something more seriously wrong with my son. This just didn’t add up.
Lennie’s progress was rewinding a little. He didn’t seem to smile or laugh as much any more and wasn’t quite as alert.
My daughter, Liliana, had developed quickly, and I wondered whether perhaps I was unfairly comparing them. “Girls and boys are very different,” everyone told me. “Boys can be so lazy! That’s all it is. Lennie will do things in his own time.”
I nodded, but my instinct was still telling me something wasn’t quite right.
‘My gut feeling was right’
One day in July 2022, I took the children for a day out with my parents. By now, Lennie was six months old.
Afterwards, I said: “I have a gut feeling something’s wrong.” I took Lennie to A&E at Macclesfield hospital in Cheshire and he was admitted for observation. It wasn’t long before he had one of his attacks and luckily the doctors were there to see it.
“This isn’t reflux,” a consultant told me. “Lennie is having infantile spasms. It’s a form of epilepsy.”
I was devastated. I’d never even thought of epilepsy. Arrangements were made to transfer Lennie to Alder Hey Children’s Hospital in Liverpool for a brain scan.
When another doctor looked at Lennie’s eyes, he agreed the white specks needed investigation and arranged for us to see an ophthalmologist. After tests, I was told the specks were a sign of something sinister. Little Lennie had cataracts in both of his eyes. I was shell-shocked.
Cataracts are cloudy patches that develop on the lens, which can usually be treated with surgery. I’d heard of the condition in elderly people, of course, but never in a baby.
This was the last thing I’d expected. I was told that in the UK around three in 10,000 babies are born with cataracts, but for them to be so serious, so quickly, was very rare.
It was horrifying. I’d arrived at A&E thinking my baby son had a case of reflux – now I’d learned that he had epilepsy and cataracts. It was a bombshell, and it was so much for me and his dad, Thomas, to take in.
Yet, as the news sank in, everything slotted into place. I remembered Lennie didn’t really look up very often, and I realised he wasn’t focusing on me either. He wasn’t smiling, laughing or reaching out as much as he should – all because he couldn’t see.
It was heartbreaking. Yet it all made sense. My mum instinct had been right all along. Lennie had his first eye surgery, aged seven months, in August last year. The nurses let me rock him to sleep before they put the cannula in.
Even so, it was nerve-wracking. I was panic-stricken that something might go wrong. Lennie was so small to have such a serious operation. I worried he could lose his sight completely or might never wake up from the anaesthetic.
“Don’t worry,” I whispered to him. “Mummy’s here.” It felt like an age as I waited with Tom for him to come out of theatre. After two-and-a- half hours the doctor came to find us. “It went well,” he smiled. I felt my knees buckle as tears of relief streamed down my cheeks.
Lennie needed further operations in September and December. Each time, I was frantic with worry, but he made a good recovery after every one and astonished us all. He was so resilient. In January, Lennie was ready for his first pair of “grown-up” glasses.
When the nurse put them on him in the hospital, he took a moment or so to get used to them. Then he looked up at me from his pram and gave me the most beautiful smile. It was a moment that melted my heart, and I will never forget it.
‘He hasn’t stopped smiling’
“Hello sunshine,” I beamed. Lennie was seeing me clearly for the first time. It was almost like he was reborn that day. He certainly hasn’t stopped smiling since and I’ve been told his prime vision is 60cm. We’re hoping that will continue to improve.
He is really progressing too. He is laughing and looking around, and is so much more alert than before.
Now, at 14 months, Lennie’s making sounds and is almost ready to say his first word. It looks like he’s not far from crawling, too. He loves playing with his big sister Liliana and of course she fusses over him like a mother hen.
Lennie’s seizures have stopped thanks to his medication, and we hope he will grow out of them completely in time. He’s really good at wearing his glasses. When he gets tired, he takes them off and rubs his eyes, and I know that’s a sign he’s ready for bed.
His doctors have been amazing. We still go for regular hospital checks and I’ve been told he will need further eye surgery in the future. For now, we’re enjoying seeing Lennie’s beautiful smile.
My advice to other mums would be to follow your gut feeling. If you feel something isn’t right with your child, just act on your instinct.
Lennie’s smile, every day, is a reminder to me that I did the right thing.”
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