Gazing at my newborn baby boy, I felt my heart sink. It should have been a magical time.
But something was wrong with him.
Born on 20 September 2019, Reuben was adorable, and I fell in love with him immediately.
But I couldn’t help noticing his slightly abnormal head size and his ear lobes.
‘He’s got what Olivia had,’ I said to my husband Sean, now 37.
I knew it in my gut.
Our firstborn, Olivia, had passed away at just nine months old in May 2013, from a condition so rare it didn’t have a name.
She’d been a happy little girl for her short life, before a bad seizure caused her body to shut down – we spent her last few weeks in a hospice before she slipped away.
Sean anddevastated us.
