My son was born without eyes and I was told he would die before he was even born – but then a miracle happened
A BABY boy who was born without eyes and could have died has GROWN a pair of eyeballs, his mum revealed.
Jeremiah, now four, was in a GP waiting room when Serena Pascall, 46, saw a “shiny black marble” behind an open eyelid.
His vision is now gradually improving after his parents were told he had a low chance of survival.
And Serena, of London, defiantly said: “I’m determined to give him as much joy as possible.”
She and husband Darren were given the option to abort Jeremiah when they learnt he had the rare genetic disorder Trisomy 13.
Doctors thought he would die before birth or shortly after. He was also born with six fingers, six toes, and was deaf.
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But they only found out he had no eyeballs, an untreatable condition called bilateral anophthalmia, after he was born.
Serena wrote in a book: “I began to sob, running my finger over Jermiah-Lee’s eyelids. They were soft, squashy… empty.
“Afterwards, I shut myself in a pitch-black bathroom and tried to imagine what life would be like for our son.
“How will he ever be happy? I thought.”
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Mum-of-six Serena said her family learnt to give him chest compressions because Jeremiah, nicknamed JamJam, often stopped breathing.
But when they were in a GP waiting room when he was aged eight months, he suddenly opened an eyelid for the first time.
Serena wrote: “I gasped as I saw what looked like a shiny black marble behind it.
“‘He’s got an eye! Can you see an eye?’ I asked the woman next to me.
“‘Yes, that’s an eye,’ she said.
“To my astonishment, it was confirmed JamJam now had two eyes and his diagnosis was changed to microphthalmia (small eyes).
“Though very limited, he had some vision.
“‘He actually grew eyes,’ I said. ‘It’s a miracle,’ Darren replied.”
Trisomy 13
What is it? A serious, rare genetic disorder which severely disrupts normal development. In many cases it results in miscarriage, stillbirth or the baby dying shortly after birth.
A very rare birth defect where a baby is born without one or both (bilateral) eyes. It can occur alone, with other birth defects, or as part of a syndrome.
What are the symptoms? Symptoms can include an absence of one or both eyes, nasal problems or abnormalities to the face and head including smaller size or ear malformations.
What’s the treatment? There is no specific treatment. Doctors will usually focus on minimising discomfort and ensuring the baby can feed.
Where can I find more? Visit the NHS here for more information.
They threw JamJam a huge party for his first birthday with music therapy, sensory play and a bouncy castle.
Serena added: “As I watched him shaking a red maraca with a huge smile on his face, I felt like the luckiest mum in the world.
“Now he is four and still has difficulty breathing and suffers with severe epilepsy.
“He has visual stimulation therapy at home and at school, and is successfully responding to light.
“We believe his vision will continue to improve. A few weeks ago, he had three seizures and was taken to hospital.
“He is still there, currently intubated to help him breathe, but we’re all hoping he will get better very soon.
“People often ask if I’d change anything. Though I’d love to take away JamJam’s disabilities, this is his journey.
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“And I’m determined to give him as much joy as he gives us.”
Serena’s book JamJam Can! is available on Amazon.