Puppy power

Gil­lian Gilli Cas­sidy, 37, from Ban­gor, County Down, just knew some­thing was wrong with her baby...

Pick Me Up! - - CONTENTS -

Doc­tors as­sured me ba­bies get all sorts of in­fec­tions

Look­ing at my poorly baby, two thoughts flit­ted through my mind.

First... Some­thing is wrong.

Then... Is this what they call mother’s in­stinct?

Lu­cia was our first child for my hubby An­ders and I.

De­spite suf­fer­ing with ex­treme morn­ing sick­ness when

I car­ried her, the preg­nancy had gone to plan.

And, when she was born in May 2009, weigh­ing 6lb 6oz, doc­tors had given her a clean bill of health.

That lasted just two days, when she got her first vi­ral in­fec­tion. She had a rash and a tem­per­a­ture.

‘It’s nor­mal,’ the nurses said, treat­ing Lu­cia with an­tibi­otics. But that was just the start. Next, Lu­cia wouldn’t latch on to feed and I had to ex­press breast­milk onto a spoon.

‘Lots of ba­bies strug­gle,’ I was re­as­sured by the medics. But, even after we took her home after five days, Lu­cia didn’t get better. The vi­ral in­fec­tions were re­lent­less. After wasted trips to the GP where I was told not to panic, I stopped tak­ing her.

‘Chil­dren get all sorts,’

I said to An­ders.

I’d never been a mum… How would I know? But deep down, my in­stincts were scream­ing…

Some­thing isn’t quite right.

Like how, some­times, Lu­cia would go days or even weeks with­out fill­ing her nappy.

Not walk­ing or talk­ing, still like a lit­tle baby.

‘Is it my fault?’ I fret­ted to An­ders. Was I do­ing some­thing wrong?

Doc­tors in­sisted she was fine, just a bit slow.

They as­sured me that all ba­bies got some in­fec­tions.

Then, one day in 2011, An­ders went out to play footie.

‘So it’s just me and you,

sweet­heart,’ I cooed to Lu­cia.

I fed her cock­tail sausages, ripped them into tiny pieces. She still strug­gled with solids.

Ex­cept after one bite, she started turn­ing blue.

She’s chok­ing!

Pan­ick­ing, I opened her mouth, tried to get the food out, but it was stuck.

Grab­bing Lu­cia, I ran out­side, hop­ing to get help from a neigh­bour.

Turn­ing her up­side down, I started slap­ping her hard on the back.

And then, sud­denly, the sausage flew out.

I crum­pled onto the grass sob­bing tears of anger and frus­tra­tion.

Chok­ing could hap­pen to any child. Yet ev­ery­thing seemed to hap­pen to my poor Lu­cia.

It all had to be con­nected. And I had to get her help.

Speak­ing to Lu­cia’s health vis­i­tor, I in­sisted on be­ing re­ferred to hospi­tal.

First, we were seen by a speech and lan­guage ther­a­pist.

They quickly dis­cov­ered Lu­cia had a prob­lem with her oe­soph­a­gus.

She was put on a soft-food diet till she learned how to eat.

Feed­ing her liq­uidised food at least meant she was un­likely to choke again.

And, over the next year, An­ders and I took Lu­cia from one doc­tor to an­other.

So many spe­cial­ists, but not a lot of an­swers.

Still, at least fi­nally some­one was lis­ten­ing to our wor­ries.

Then, in 2012, when Lu­cia was 3, she was given a blood test look­ing for a va­ri­ety of dis­eases and syn­dromes.

On the form, I recog­nised some names of con­di­tions. But one stood out – 22q11. What on earth is that? I won­dered.

Back home, I re­searched it on­line.

Within se­conds, I knew that what­ever this con­di­tion was, my girl had it…

Chil­dren on­line with 22q11 looked iden­ti­cal to Lu­cia.

Our lit­tle girl had nar­row eyes and a long nose with a wide bridge. She had no folds un­der her eyes. And she had a short stature and tiny feet. Right then, I was con­vinced. Lu­cia had 22q11.

Sure enough, the blood tests con­firmed it.

Known some­times as Di­ge­orge syn­drome, the con­di­tion is caused by a ge­netic prob­lem called 22q11 dele­tion.

‘Un­for­tu­nately there’s noth­ing we can do to help,’ a doc­tor said.

I found out some 22q11 ba­bies die within days of birth, with no im­mune sys­tem.

We were the lucky ones.

It turned out Lu­cia had heart de­fects, prob­lems with her im­mune sys­tem and de­vel­op­men­tal de­lay.

She needed round-the-clock care, and her future was un­cer­tain. Her body and brain could only be mon­i­tored, es­pe­cially around pu­berty.

So I quit my job. I was heart­bro­ken, but I knew Lu­cia needed my all.

By then, I had Min­nie, now 6, and Otis, 5.

Thank­fully, tests showed they weren’t af­fected.

But things got worse for Lu­cia.

She had speech and lan­guage de­lay and, aged 6, she was di­ag­nosed with autism.

Ap­par­ently, it’s com­mon in those with 22q11.

Lu­cia was 5 when she fi­nally learned to speak.

Frus­trated, she suf­fered so­cial anx­i­ety and tantrums.

In­stead of bond­ing with hu­mans, she pre­ferred an­i­mals. She adored them, ev­ery horse or dog we passed was pat­ted.

‘I’m not Lu­cia, I’m a dog!’ she’d say with a woof.

She’d refuse to go out un­less she was dressed as a dog. With her face painted like one, she’d crawl on all fours.

She even licked peo­ple she knew well, bless her.

But see­ing her on some days when she was down was a dif­fer­ent mat­ter. It broke my heart. I felt so hope­less.

In the future, Lu­cia could de­velop schizophre­nia or psy­chosis.

I needed to do more. So, in April 2016, I helped open the first 22q11 clinic in North­ern Ire­land. With over 150 on the books, it was clear peo­ple needed my help.

In­cred­i­bly, although peo­ple think it’s rare, it af­fects one in ev­ery 900 births.

I started work­ing at the clinic as a pa­tient ad­vo­cate co-or­di­na­tor, along with a ge­neti­cist and psy­chi­a­trist.

Right now, we’re mon­i­tor­ing Lu­cia’s move­ments. Her right shoul­der juts out due to spine cur­va­ture and she may need a back brace when she reaches her teens.

Lu­cia suf­fers with con­stant ab­dom­i­nal pain and still has vi­ral in­fec­tions ev­ery three weeks.

But she amazes me. ‘Aren’t I so lucky to have 22q11?’ she said out of the blue, age 8. ‘I’m the only one in the fam­ily to have it, and you can talk about me at work.’

Be­cause of my work at the clinic, Lu­cia’s made life­long friends with other girls like her. She has 22q11 sleep­overs. We even have clinic trips out with 22q11-ers world­wide!

It’s amaz­ing to see my girl chat away to peo­ple like her.

But the one thing that will re­ally bring joy to Lu­cia’s life is a dog. We’ve been told we are get­ting an as­sis­tance dog from a char­ity called As­sis­tance Dogs North­ern Ire­land.

The dog will be trained to help her cross the road, as she has no aware­ness of dan­ger.

And it’ll help calm her when she has a melt­down, too.

‘When I’m older, I’m go­ing to be a vet with eight pugs!’ she grins.

Lu­cia at­tends a spe­cial school now. But, in or­der to get her to wear her grey school tights, we had to con­vince her dogs wear tights, too.

And, yes, I found pic­tures of dogs in tights – thank good­ness for the In­ter­net!

Go­ing for­ward, An­ders and I aren’t sure what the future will bring for Lu­cia.

But I know if our pup­py­mad princess can face it smil­ing, then we can, too.

Some chil­dren with the con­di­tion die within days of birth

We’ll face the future with a smile

My brave, beau­ti­ful daugh­ter

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