Even doctors didn’t know much about our Logan’s condition…
Gemma Keir, 28, Stevenage
It’s the event to which every mum-to-be counts down – the moment of the precious baby scan.
But the sonographer looked worried at mine, and I found out my baby had a small hole in his heart. ‘What will happen?’ I asked. The midwife wasn’t sure and told my husband Max, 29, and I to hope for the best.
It was May 2012, and weeks of check-ups followed – with the news just getting worse.
The doctors said that, along with the defect in our son’s heart, further scans had shown additional problems.
‘We’d advise a termination,’ the doctors urged us.
No chance, I thought. ‘He’ll be perfect to us, no
matter what,’ Max told me.
Whatever the future held, we knew we’d love our baby.
So, when Logan arrived four months later, kicking and screaming, we felt relieved and were able to take our boy home.
They thought he’d need heart surgery immediately, but, after further scans, nothing was needed just yet.
He was healthy, breathing alone – if a little discoloured.
But, three months later, Logan began to struggle. He wouldn’t feed, his breathing was weak and he’d collapse in my arms.
In February 2013, he had open-heart surgery to fix multiple holes in his heart, but there were complications.
As he was coming around next day, Logan’s lungs collapsed.
He was put in a coma and laid
on a cold mat to help his body recover and protect his brain.
I went to see him and he was still and cold to the touch.
But, five days later Logan bounced back and, eventually, we were able to take him home.
Life went on, Logan grew, sat up and started babbling. Every day was a blessing. But aged 3, he was falling behind in his development. Others his age could string sentences together – my boy couldn’t even say ‘Mummy’. The doctors reckoned Logan was just a slow learner, nothing to be anxious about. So I researched, and came across Digeorge syndrome, a chromosome disorder. A condition that’s present from birth, Digeorge syndrome is caused by a genetic problem called 22q11 deletion. This can lead to heart defects and learning difficulties. The symptoms matched Logan’s, but the condition was rare, affecting just one in 4,000. We were referred to a community paediatrician and she agreed to run a genetic test. ‘Thank you,’ I said, tearfully.
Six weeks later, the results
were in and Logan had tested positive for Digeorge.
I was relieved to have the diagnosis but terrified, too.
Logan’s missing gene meant a world of unknowns, more conditions could develop, with no way of curing any of them.
But I still wanted my son to have as normal a life as possible.
We turned to the Max Appeal charity, who introduced us to other families whose children have the condition.
It provided us with some much-needed support.
If my husband was working, a representative from the charity would attend Logan’s school meetings or hospital appointments with me.
They knew the condition and exactly what Logan needed.
With their help, we kept Logan in mainstream school.
Even now Logan is 6, new health concerns crop up with him every day.
When I look at his younger brother Caleb, 3, I see how far behind Logan is.
That’s probably harder to take than everything else – watching my youngest son
outgrow the oldest.
But they love each other so much, and I love them both beyond words.
Now, Logan is able to say ‘Mummy’ and I really love hearing his little voice.
And, when we cuddle up, nothing else matters.
Every little part of Logan is unique and this is just the way he was meant to be!
HEALTHY FACTS +++ The University of East Anglia found a Med-style diet reduces women’s risk
Logan after his heart surgery Me and my lad having fun at Disneyland!