When Zoe Haworth’s longed for first baby was born, nothing could have prepared her for the moment he was placed on her chest, then alarmingly whisked away from her.
As they resuscitated the tiny baby, Zoe, 30, held her fiancé Ryan Davis tightly.
"Is it a boy of a girl?" Zoe asked. The midwife replied: "We can’t tell."
It was several hours before doctors could determine whether the newborn was a boy or a girl following careful and thorough examination.
The eventuality was so rare that doctors at the Evelina children’s hospital, London had never seen it before.
Baby Leo was finally diagnosed with two extremely rare birth defects.
The tot suffers from Hypospadia, a condition meaning his male genitalia didn’t develop correctly and cannot be seen outside his body.
He also has a rare facial defect called Pierre Robin sequence, meaning he has a U-shaped cleft palate, a tiny chin and needs his jaw constantly pushed forward to make sure that his tongue doesn’t fall back and block his airway.
He also suffers from seizures and has to be put on his side or his tummy to make sure that he doesn’t suffocate.
Worrying: Leo needs special breathing apparatus to help with his condition
Zoe explains: "When Leo was born and came out totally blue, I knew that he was going to have to fight to stay alive.
"He was worked on by twenty members of medical staff that day and I couldn’t hold him. It was an incredibly difficult ordeal but nothing really in comparison to the ups and downs my poor little boy has had to go through over the last three years."
Following his birth in June 2011, Leo spent 21 days in a special care unit.
The two rare birth defects had been passed down through generations in both Zoe and partner Ryan's families, but only manifested themselves for the first time in little Leo in odds of one-in-a-million.
Zoe said: "I felt so guilty, like I was somehow responsible for his pain and suffering but in time, I realised that there was nothing I could have done to change it.
"Ryan and I had met at university and I’d fallen pregnant unexpectedly after being together just three months. The pregnancy alone put enormous pressure on our new relationship but with the added troubles of Leo’s health, we had to pull together to make it work.
"Ryan never faltered though and has always stood by me with brilliant support as a loving father."
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