Will this Be Our Girl’s Last sleep?
Lorna’s girl was born with the risk that she could die as she nods off
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