Chat health

Even doc­tors didn’t know much about our Lo­gan’s con­di­tion…

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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!

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