A mother whose baby was born with a rare condition said her instinct stopped her child from "ending up in a graveyard" after doctors initially just dubbed him as "lazy". Laura Cayzer, 30, and her partner, Anthony Lewis, 31, welcomed their fourth child Lennox into the world on September 3, 2022.
The couple, from Skelmersdale, said there were no problems in Laura's pregnancy until 42 weeks in, when she had to be induced, the Liverpool Echo reports. However, after her "horrendous" labour, the mother noticed her son appeared "floppy" when he was born and said she immediately knew something wasn't right.
Laura says she was made to feel like a "hypochondriac" before Lennox was later diagnosed with PURA neurodevelopmental disorder at six weeks old. The rare genetic condition that only currently affects 400 children worldwide.
Laura has credited the "firecracker" nurse who saved her son's life as she reveals that her baby made a "miraculous" recovery but he will be left disabled. Laura told the ECHO: "Labour with him was absolutely horrendous and I was induced at 42 weeks. I had to go through every stage of induction because he was not coming out.
"Once he was born I noticed he was floppy, the doctors called him a lazy baby and we were sent home within four hours of me giving birth. I was already having problems with him feeding but they told us it was because of a medication I had been on and it should be better in a few days."
After Lennox lost 13 per cent of his body weight, Laura knew something wasn't right and she rushed him back to hospital. He was found to have a high temperature and medics kept him in overnight. But when Laura and Anthony returned home briefly to pick up some items, they received a terrifying phonecall.
Laura said: "As soon as we walked through the door we got a call from the hospital to say a nurse who was watching him saw he stopped breathing and they needed to ventilate him and send him to Alder Hey. We grabbed the first things we could find and rushed back into the taxi.
"I remember sitting in the taxi sobbing. If it wasn't for the little Scouse firecracker of a nurse who was watching him, Annie, my son would probably be dead and ended up in a graveyard."
Over the next week, dozens of tests were run on Lennox in the PICU in Alder Hey Children's hospital to find out what was wrong with him. Laura said: "It was horrifying. We didn't tell our other children and they were staying with friends and family while this was happening. We were staying at the Ronald McDonald house so we could be closer to Lennox.
"I remember one night I couldn't sleep and went over to the ward early in the morning and they just let me in to see him. I wasn't able to touch him because he was on a ventilator but I could see him and talk to him."
Lennox thankfully fully recovered and was able to come off his ventilator. He was discharged from hospital on September 28 but doctors still don't know what caused his health to improve so drastically. Genetic testing revealed that Lennox had PURA neurodevelopmental disorder, which occurs when one of a person’s two copies of the PURA gene, located on chromosome 5, do not operate normally.
Symptoms of the rare disorder include low muscle tone, breathing problems, seizures and seizure-like movements and feeding difficulties. However, since little Lennox was discharged from hospital he has been doing very well and has regular check ups with doctors.
Laura said: "We know Lennox will be disabled, but we don't know how badly disabled he will be. At the moment he is showing no signs of PURA and we don't want him to be defined by it, we want Lennox to define Pura.
"I want to tell parents if they think anything is wrong with their baby, being floppy, low muscle tone, being too sleepy, then don't take no for an answer and get them checked. We were made to feel like hypochondriacs, but we knew he wasn't right."
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