A Burton Latimer family have made a heartfelt appeal to the public after doctors were unable to diagnose their son’s life-threatening illness.
Ethan Smith was born just before Christmas last year as a healthy boy.
But 11 hours into his life he was rushed into neo-natal intensive care and put on life support.
Six months and numerous hospital visits on mum Emma, 24, has spoken about Ethan and his family’s trauma.
She said: “It’s been awful and absolutely gut-wrenching, to be honest.
“It’s just one thing after another and you don’t even get time to deal with the first thing before another comes along.
“Everything that he has had has been the worst case, it’s just constant and it’s heartbreaking.”
Ethan’s bowel had perforated, causing E.Coli sepsis and bacterial meningitis.
He was rushed to hospital in Leicester for emergency surgery and had part of his large intestine removed and now has a stoma (an opening on the surface of the abdomen which has been surgically created).
He has a low immune system and respiratory problems.
He has very irregular breathing which sometimes stops altogether.
His lungs can collapse from mucus building up so he needs daily suction, physiotherapy and an apnea alarm.
Emma says he has spent about 80 per cent of his life so far in hospital.
She said: “In his first six months we’ve probably had 17 hospital admissions.
“He’s probably spent about 80 per cent of his life in hospital.
“He’s had two types of brain surgery, the first being an endoscopic third ventriculostomy (ETV), and he now has a ventricloperineal (VP) shunt to drain the fluid from the brain into his abdomen which he has recently recovered from.
“He will have some neurological damage but we will not know what until he’s older and showing the signs.”
But despite stopping breathing four or five times a day and all of the trauma he has been through, Ethan is a happy and content baby.
Mum Emma added that it’s his smile that keeps her family going.
She said: “Every day we take it hour by hour and we check everything but he’s not fazed by it at all.
“He’s so content and so smiley and when you look at him he’s so happy you wouldn’t even know he was poorly.
“It’s that smile that helps us through the worst of it.”
When he’s not at hospital, Ethan is at home with Emma, dad James Mather, 27, and big sister Lydia.
Now the family want to raise awareness of his symptoms and speak to anyone who may have gone through something similar.
Emma said: “The doctors have done every test possible and there’s been no diagnosis.
“The only things we can find are in America.
“Watching your child go through all this and not knowing whether they are going to survive each time is devastating.
“We’re hoping someone can help us and his story can help others with signs and symptoms or maybe a family going through a similar situation.”
To keep up to date with Ethan’s progress, visit http://www.ethansstory.co.uk/.
To contact Emma directly you can email firstname.lastname@example.org.