By Ryan Fahey

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A TV super nanny has spoken of how her concerns about her daughter’s health were repeatedly dismissed by doctors . Laura Amies, who has 25 years experience working with infants and her own show on Channel 5, says her concerns were ignored. It wasn’t until Laura, 42, took then seven-month old Elisabeth to a private specialist that she learned her daughter’s life would never be the same again. She was finally diagnosed with Spinal Muscular Atrophy (SMA) Type 1 – a rare genetic disorder that weakens muscles and has a life expectancy of less than two years. Even with her published books on infants and a reel of child psychology qualifications, Laura said doctors repeatedly ignored her pleas. She says she pointed out her baby was showing signs of something being seriously wrong very early on. One of the first concerns was Elisabeth would not latch and had no interest in feeding. She also developed purple, cold marks on her arms. She told the Daily Mail the first time she became worried was a day after she was born. “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,” she said. “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’.” She felt the nurse tried to dismiss the concerns because Elisabeth was her first child, but eventually noticed the seriousness of the situation and jumped in to help. Laura said she was made to feel as though she was overreacting countless times over the coming months. She felt she was being painted as an “overly sensitive first-time mum”. However, she was right all along. Her baby has a life-limiting disease that has left her a captive in her own body. On taking Elisabeth home from the hospital, she noticed the little girl’s feet were cold and pale. The next month, “deep purple marks” started forming on her skin and the little one was always congested. Taking her concerns to doctors, she was told it would passed and did her best to carry on. The same thing happened when Elisabeth would become unresponsive. She went to emergency appointments, but was sent away with the same sentiment. At one point the baby was said to have “severe reflux”, but the medication she was given worsened her symptoms, she said. She says doctors repeatedly patronised her and that she was “almost laughed at” when she went to A&E when the youngster was rapidly breathing to the point of panting. Medics said Elisabeth was experiencing a fever and that she was trying to cool herself down. However, Laura now knows that little Elisabeth was struggling to breathe because her lungs were failing. When Elisabeth lost control of her head and suffered a rapid decline in her physical development, she was told “there is nothing we can do for you”. Laura even started questioning herself, wondering if she’d developed psychotic illness because everyone was telling her Elisabeth was fine. Seven months later, Laura went to a private specialist and was given the answers she needed to hear. Ten minutes into an appointment with a private neurologist, Laura was told the baby could have SMA – which was eventually also confirmed by a genetic test. SMA causes muscle weakness, loss of movement, difficulty breathing in the first weeks and months after birth. Without treatment life expectancy for some kids can be as little as two years. If treatment is only begun once symptoms have started, most of these infants will never walk independently. Many will need mechanical ventilation, nutritional support, and 24/7 care. Recent “revolutionary” gene therapies can halt the death of nerves responsible for muscle function.