A mum who suspected her baby had serious health issues says she was repeatedly turned away by doctors who said he was “just lazy”.
Kata Dobbs, 30, says doctors continuously overlooked and ignored her concerns in the lead up to her son Leo’s devastating diagnosis. The mum-of-five, from Birkenhead, Merseyside, was over the moon when she gave birth to a seemingly healthy baby boy, but at seven-months-old, Kara noticed Leo was struggling to hit “normal” baby milestones, like picking up items and keeping his head up.
When she kept returning to doctors after suspecting there was a problem, Kara says they treated her as if she was doing something wrong. She added: “As soon as he was born, he latched on amazingly. I remember all the nurses giving me balloons celebrating how easily I breastfed.
“And then two weeks later is when I started noticing things going downhill. I breastfed him and he kept vomiting. He would sleep for six to seven hours a day and I knew that wasn’t normal for a baby. When I would go to the doctors they would send me home with [rehydration sachets] and tell me he would be fine and that I was a nervous mum.”
Doctors told Kara that her son Leo was just lazy
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Image:
liverpoolecho)
When Leo was four-months-old, Kara was visiting doctors every few weeks, urging them to listen to her concerns. Kara claimed doctors treated her “horribly, like a young over-paranoid negligent mum”. During one visit, Leo projectile vomited in front of the doctor. Kara said: “He asked me if there was something I wasn’t telling him. And I just broke down in tears saying ‘I’ve been begging you guys to help me and no one’s listening. And you’re treating me like I’m doing something wrong.’ It was just very difficult and they made me feel like I was the one failing Leo.”
At five months old, Leo’s condition deteriorated further. He turned “floppy” and unable to keep his head up or pick up items. “I was told he was lazy,” Kara said. “I was putting him in baby bouncers, I was encouraging him, he was having belly time but he just couldn’t cope. They told me I was just young and boys are lazy. And then they sent me home again.”
After seeking out a second opinion, Leo was given a blood test and scan which showed he had an enlarged heart. At seven months old he was diagnosed with Infantile Pompe disease – a condition affecting only 25-30 children in the UK – which means sugars harmfully enlarge his vital organs.
It is a progressive condition that causes muscle weakness, lack of reflexes, difficulties breathing and swallowing and an enlarged tongue, liver and heart. Kara said she had to become almost like a medical expert overnight as she tried to get her head around the diagnosis, treatments and the very short life expectancy of children with the condition.
The pair were repeatedly turned away
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Image:
liverpoolecho)
Kara said: “They were telling me about the life expectancy. I said to myself ‘what can we do now to make this situation better?’ We immediately started discussing treatment. Now, every hurdle we hit, that’s the attitude we have. And that’s how I’ve survived. But it’s been a lot of stress to be listened to.
“I was kind of relieved in the sense that I knew something was wrong. But then I had a guilty feeling for being relieved. It was a flood of different emotions and I just wished I was wrong. It was a very turbulent, uncertain time.”
Leo, who is now aged 10 is “doing well” Kara says, and despite his life-limiting condition she tries to give him as normal a life as possible. He is also being supported by a 24-hour care team seven days a week, due to his complex needs.
The mum has since written a book to raise awareness about Pompe in a creative and informative way, and normalise medical equipment which can often be perceived as intimidating to people who don’t know what it’s for. She said: “Parents don’t get listened to. It’s very frustrating, even to this day. It’s a constant fight. But I think if we had more awareness about the disease it would be better.”