Kara Dobbs said she felt ignored and overlooked when she spoke to doctors about her newborn
Kara Dobbs and son Leo, 10(Image: Submitted picture)
Doctors told a mum her baby was ‘just lazy’ when she suspected he had serious health issues. Kara Dobbs spoke to the ECHO about how she felt she struggled to get doctors to listen to her before her son’s devastating diagnosis.
Kara, from Birkenhead, was delighted when she gave birth to a seemingly healthy baby boy, who she called Leo. However, at seven-months-old, Kara noticed her son was struggling to reach ‘normal’ baby milestones, such as keeping his head up and picking up items.
The 30-year-old said she often felt ignored and overlooked when she repeatedly returned with her baby to the doctors after suspecting something was wrong. Kara told the ECHO: “There were no issues with the pregnancy at all. 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. He wasn’t eating and he was just sleeping all the time. 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.”
When Leo was four-months-old, Kara said she was going to the doctors every few weeks because she was concerned about her son. Kara claimed doctors treated her “horribly, like a young over-paranoid negligent mum”. On one occasion, 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.”
Kara and Leo on Bonfire Night
At five months old, Leo’s condition deteriorated further. He became “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.
Leo’s mum says he who has a mischievous eye roll from time to time
She said: “When they told me, my head just clouded and I zoned out. I was just staring out the window. It was like I wasn’t in the room but in the room at the same time. It was like an out of body experience.
“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 is now 10 years old and Kara says he is “doing well”. Kara tries to give Leo as normal a life as possible, despite his life-limiting condition. He has a 24-hour care team seven days a week, due to the complicated care he needs.
Kara said having Leo has made her a better mum
Kara is now married to Adam, 32, and has four more children, Willow, eight, Ragnar, six, and step-children Seren, 11, and Alex, nine. She has 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.”
Kara said she wants Leo to expereince as much as he can
Despite his illness, Kara says Leo is “sassy as ever”. She continued: “He loves people being affectionate with him. If you’re being silly and goofy with him he’s laughing at you. He loves it and he thrives off it. He can smile but it’s a bit weak, but you can see it when the little dimples in his cheeks show.
“Give him the chance and he’s mischievous. He’s all there mentally, he just can’t speak, so he communicates with his eyes. When he wants something he does a little eye roll.
“But the main thing he loves is going outdoors. He loves the scenery, the seaside, the forests, the big walks and hikes that we do. That’s what he gets a lot out of. As much as there’s no cure, you can still have nice memories and experiences.”