Health The advice you need
We’re still searching for a cure
Rame Mayer-Maguire, 35, Rugby
Holding my son George for the first time in February 2017, I was elated.
After a healthy pregnancy I’d been induced at University Hospital Coventry and Warwickshire.
Now George was here, brother to Holly, then 3.
My husband Tom, then 30, and I felt blessed.
But a few hours after he was born, George began gasping for air and turned blue.
Nurses rushed him to the neonatal intensive care unit, put him on a ventilator.
‘What’s going on?’ I begged.
But it was two weeks before doctors could tell us that our beautiful son had lung surfactant deficiency.
Tom and I listened in shock as they explained that it was a rare condition caused by a faulty gene, and meant that George’s lungs didn’t work properly.
He’d suffer lifelong breathing problems.
‘There’s no cure,’ doctors explained, ‘and very few treatments available.’ They couldn’t tell us how long we’d have with our boy. We held George’s hand, told him we loved him.
But my heart broke every time I looked at his frail little body hooked up to a machine that breathed for him.
He also needed a feeding tube. We were desperate for a miracle. Three months later, we got one. ‘George is breathing on his own,’ doctors said. ‘He’s well enough to go home.’
We were thrilled. Only, while George had improved, he still needed to be hooked up to oxygen all the time.
He was also tube fed to ensure he could get as many nutrients as possible into his stomach.
Back home, we learned how to manage his condition.
It wasn’t easy.
Whenever he caught a virus or had difficulties breathing or feeding, we were back at hospital.
Holly was incredible. Always calmed her little brother down, singing to him or stroking his hand
