Baby's heartbreaking diagnosis after mother told she had 'new mum anxiety'
A heartbroken mum was told she had 'new mum anxiety ' only to discover weeks later that her baby had a rare and devastating brain disorder.
Ezra Mattinson, now one, was initially dismissed by doctors, with them joking that he had "happy baby syndrome". However, an MRI scan later revealed the tot had Leigh syndrome, a terminal neurological condition that affects just one in 40,000 newborns, reports the Mirror.
The illness causes the progressive loss of mental and movement abilities - and can become so severe the body may not have the strength to fight off a common cold.
Mum Laura, 33, and dad Josh, 32, from Hull, knew something was wrong when Ezra suddenly began "unlearning" milestones at eight months – losing the ability to sit up, crawl and talk. He also never cried, something that alarmed them both.
Laura, from Hull, says GPs initially just told her to "relax" and joked he was suffering from "chilled, happy baby syndrome". Ezra eventually got an MRI scan and medics in hospital recognised he had a neurometabolic disorder in June.
Now mum-of-one Laura is focused on as making as many memories as possible with Ezra and is keen to take him to Disneyland before his third birthday.
She said: "It's devastating because, if we hadn't been dismissed so early on, we could've known sooner.
"Ezra started life hitting his milestones as normal - he could talk, sit up and was beginning to crawl. The first thing we noticed, even though he was never a big crier, was that he just stopped crying completely.
"Doctors just told me I probably had new mum anxiety, and joked he had happy baby syndrome - one even asked why I was 'so bothered about him crying."
Laura, who cares for Ezra full time, said he was progressing at a normal pace and even learned words including "dad", "hiya" and "bye" - by the time he was eight months. However, his development began to decline and by April, he was only able to babble and could only lie on his back.
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"He started regressing. Ezra was unlearning all the things he already knew - like sitting up independently and speaking. At seven months, he started trying to crawl - but that stopped, too. We were so worried about him being in pain," Laura added.
After being "repeatedly dismissed" by doctors, Ezra's inability to cry was spotted by a nurse administering his one-year vaccines. The nurse said it "wasn't normal" for babies not to cry after being injected and decided to refer him to Hull Royal Infirmary for further tests.
An MRI scan at Hull Royal Infirmary on April 15 revealed abnormalities in Ezra's brain and days later doctors confirmed the devastating news that he had Leigh syndrome, a rare and life-shortening neurometabolic disorder.
Laura said: "The paediatrician explained there were changes but wouldn't say what - I automatically thought the worst. Josh and I went in to see him and were told it could be mitochondrial disease. I didn't want to know too much."
Genetic testing confirmed the diagnosis, and shockingly, Laura's 65-year-old mum was also diagnosed with adult onset Leigh syndrome, though she had shown no symptoms for most of her life.
Adult-onset Leigh syndrome, which can affect anyone over the age of 18, is incredibly rare, with only a few cases diagnosed around the world, according to the National Library of Medicine. While Leigh syndrome is known to primarily affect newborns, adults may be affected, too.
Laura continued: "Mum's been asymptomatic for a long time. She got a diagnosis at the age of 60 after developing a bit of weakness in her arms and legs - she's also partially-sighted and partially-deaf now.
"After I told the doctors about mum, they said they didn't need to take the genetic testing any further. But, as we want more kids, I took a test on July 28 to see if I'm a carrier, or if I have it asymptomatically."
Unlike her mum, Laura was told that Ezra would be unlikely to survive past the age of three - and even a common cold could mean moving to end-of-life care.
The mum of one has set up a fundraiser to make as many memories with the tot as she can, including taking him to Disneyland for his second birthday in December.
She said: "They say babies with Leigh syndrome don't tend to live past three. Josh and I have lost a lot of money coming out of work, and we want to give him the life we could've afforded had we not left."
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