Will this Be Our Girl’s Last sleep?

Lorna’s girl was born with the risk that she could die as she nods off

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Her brain and heart were fine, so what was wrong?

Lorna Wyse, 32, Worces­ter

When I fell preg­nant in 2010, I was so happy. Hav­ing a baby was a dream for me and my hus­band Chris, now 32.

Stock­ing up on toys, clothes and nap­pies, we counted down the days to meet our little girl.

I had a nor­mal preg­nancy and was feel­ing pre­pared for giv­ing birth.

But, on 4 May 2011, five weeks early, my waters broke.

‘It’s too soon,’ I cried to Chris as we raced to Worces­ter Royal Hos­pi­tal.

At the hos­pi­tal, there was no stop­ping her – my little girl was com­ing into the world early.

Af­ter an emer­gency Cae­sarean, she was born weigh­ing 6lb 11oz.

We named her Jovie.

But we didn’t even get to hold her, as she was placed in an in­cu­ba­tor im­me­di­ately, strug­gling to breathe.

It’s be­cause she’s pre­ma­ture, I thought, try­ing not to worry.

But Jovie’s breathing prob­lems per­sisted.

Days in In­ten­sive Care went by, y, with hthe the doc­tors none the wiser.

On 16 May, we were trans­ferred to Birm­ing­ham Chil­dren’s Hos­pi­tal for scans, MRIS and ul­tra­sounds.

Never leav­ing Jovie’s side, our world whirred with the buzz of the hos­pi­tal.

Nothing out­side it mat­tered.

Little mys­tery

Her brain and heart were fine, so why couldn’t she breathe?

‘You’re a mys­tery,’ I told Jovie as we stood over her in­cu­ba­tor.

Sleep­ing most of the time, like a nor­mal baby, Jovie had a ven­ti­la­tor to help her breathe.

Neu­rol­o­gists be­lieved it was a mus­cu­lar prob­lem, but other doc­tors thought it might be her brain.

Yet more in­con­clu­sive re­sults fol­lowed.

Fi­nally, six weeks af­ter Jovie was born, we got a di­ag­no­sis.

‘Jovie has con­gen­i­tal cen­tral hyp hy­poven­ti­la­tion syn­drome,’ the doc­tor ex­plained.

Also known as On­dine’s curse, it’s an ab­nor­mal de­vel­op­ment of the body’s au­to­nomic ner­vous sys­tem, which causes an in­abil­ity to con­trol breathing.

So, when Jovie goes to sleep, she stops breathing.

And, with­out help to breathe, she’d die.

Less than 1,000 known peo­ple have the con­di­tion in the world... Just 100 in the UK. Chris and I went through a roller­coaster of emo­tions af­ter the di­ag­no­sis.

Shock, re­lief, fear… But at least we fi­nally knew what we were deal­ing with.

A weight off our shoul­ders, we had to look to the fu­ture.

‘In time, she’ll live a nor­mal life,’ the doc­tor re­as­sured us.

Stay­ing pos­i­tive

We couldn’t imag­ine how, but we had to keep pos­i­tive.

Jovie was here – that was the most im­por­tant thing.

The next few weeks were a steep learn­ing curve.

Our lives had been turned up­side down.

Jovie had a tra­cheostomy – an open­ing at the front of her neck in which a tube was in­serted and con­nected to a ven­ti­la­tor 24 hours a day.

We had to learn about chang­ing the tubes and what to do if they fell out or

got blocked.

A mat­ter of life or death.

Know­ing that one day we’d be tak­ing her home was scary.

Our train­ing con­tin­ued over the next few months.

We stayed in the amazing Ron­ald Mcdon­ald House, where par­ents of chil­dren at the hos­pi­tal can stay for free.

As Jovie grew, we got more con­fi­dent look­ing af­ter her.

‘Why don’t you take her for a walk w around the h grounds?’ a doc­tor d said one day.

Our first time out.

Both ner­vous, Chris and I gripped hands as we took our girl out­side.

Jovie loved ev­ery sec­ond, beam­ing in her buggy.

Soon, the walks turned to short trips home with a nurse.

Slowly but surely, we were be­com­ing com­pe­tent with deal­ing with Jovie’s con­di­tion.

On 28 Novem­ber, our beau­ti­ful girl was dis­charged.

It was nerve-rack­ing, but I knew we were ready.

Scared each time Jovie closed her eyes, it was stress­ful at first.

Used to be­ing sur­rounded by ex­perts, we had to fill their shoes.

But soon, we were run­ning like clock­work, chang­ing her tubes and watch­ing her naps.

The great­est gift

‘Merry Christ­mas, baby,’ I said to her on Christ­mas Day.

Most par­ents can’t wait to spend their first Christ­mas with their new­born.

But, for Chris and I, it was even more spe­cial.

Now, Jovie is 6 and has started her third year of school.

Things be­came eas­ier when she was only sleep­ing at night. She needed the ven­ti­la­tor less.

In 2015, the tra­cheostomy was re­moved. She now just wears a Bi­pap breathing mask while she sleeps.

Car­ers come in ev­ery night be­tween 9pm and 7am to make sure her oxy­gen lev­els are safe.

Ini­tially go­ing to school part-time, she’s now in ev­ery day – and we’re so proud of her.

But she still doesn’t fully understand her con­di­tion.

‘Why have I got this?’ she asks me in­no­cently.

I tell her about her con­di­tion and how spe­cial she is.

Jovie is such a happy girl and a tough cookie.

She never com­plains. She’s so­cia­ble, car­ing and funny – and loves foot­ball, cricket and My Little Pony!

Al­though it’s mainly night­time we need to worry about, we have to mon­i­tor Jovie a lot.

If she’s hold­ing her breath un­der­wa­ter or strain­ing, her body won’t tell her to stop. She could pass out.

So, she needs to learn her lim­its, re­lax and take her time.

We hope there’ll be more re­search into Jovie’s con­di­tion.

Un­til then, we’ll keep plug­ging her in ev­ery night.

What­ever it takes to en­sure our mir­a­cle girl is happy and healthy, we’ll do it.

She needs help to keep breathing but no prob­lem Smil­ing

Our littl’un had a tra­cheostomy

Baby Jovie’s first days on a ven­ti­la­tor

The mask she uses now

We’re so proud of our girl

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