THESE terrific tots have one thing in common – they are all Christmas
miracle babies.
When they were born around this time last year, they survived against the odds
and are still battling various illnesses and undiagnosed genetic conditions.
As the babies prepare to celebrate their first birthdays, their mums tell CLAIRE
O’REILLY how their incredible little ones came out fighting . . .
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“I couldn’t even cuddle brave little Leo when he was born”
ON December 29, Leo will celebrate his first birthday. Yet this time last
year, his mum Summer Outlaw, 18, and her partner Ashley Roach, 27, a baker,
didn’t think their son would still be here. Summer, from Bradford, says:
“At my 12-week scan, doctors confirmed to me and my partner Ashley that Leo
had gastroschisis.
It’s a congenital condition which meant his bowel would be born outside his
body. He’d need surgery the minute he was born to put his bowel back inside
but they’d have to do it over a period of days because his body would be too
little to fit it all in at once.
All I could think was that I wouldn’t be able to hold him when he was born –
there would be no time to spare for a cuddle.
The minute Leo arrived at Leeds General Infirmary, they wrapped him in
clingfilm, then a towel. I was in tears but we decided right then to name
him Leo – our 6lb 1oz brave little lion.
The five hours he was in surgery were the longest of our lives. When we saw
him in intensive care, his bowels and intestines were hanging in a bag above
him. He looked so vulnerable.
Two days later, the doctors told me they’d discovered a heart murmur. He had
two more operations before they were able to get the stent where they wanted
it.
Over the next week, the doctors eased more of his bowel into his little body
but on the fourth day the incision where he’d had the surgery ruptured.
I remember feeling so numb. I was his mum and couldn’t do anything to help him
or make it better. The doctors put me in touch with The Sick Children’s
Trust and they gave us a room at Eckersley House in Leeds.
It was a home from home next to the hospital so we could be close to him.
They decided not to operate again on the rupture and monitored how it healed.
Sixty days, plenty of tears and sleepless nights later, I was finally allowed
to bring him home.
I’d sit and watch him for hours making sure he was OK.
Ten months on, the only giveaway to what he’s been through is the scar he has
where his belly button should be. I know I’m so lucky to have my brave
little Leo the Lion.”
To donate, see sickchildrens .
“Seeing Poppy overcome obstacles is incredible”
THE arrival of baby Poppy on December 16 changed the lives of Kerry
Kilmister, 33, and her husband Mike, 37, forever. The couple also have son
Ibby, 11, and five-year-old daughter Amber. Full-time mum Kerry, from
Chippenham, Wilts, says:
“Poppy was 6lb 1oz and seemed very sickly almost as soon as she was born. Mike
and I have two other children so we knew what we were doing but Poppy
couldn’t keep formula down and was very snuffly and wheezy.
After a few short hospital stays we were told she had bronchiolitis. She was
given a feeding tube to get her weight up.
The consultant then diagnosed her with a developmental delay. They also
discovered she had a floppy larynx which was operated on to help her feed
better.
By this time, she was almost six months old yet she wasn’t holding her head
up. She was diagnosed with hypotonia, which means reduced muscle tone, and
hyperflexia, which means she can dislocate her joints easily.
The doctor thought all her symptoms could be indicative of a neurological
disorder but that we’d have to look at her over time to see how severe it
might be.
It felt like our world was caving in. You hear those words and you wonder
whether she’ll ever walk or talk or live independently.
She also has facial hypoplasia which means the bones in her face aren’t
developing like they should. It could mean facial surgery but for now
they’ll just have to monitor her.
We’ve recently been passed on to a geneticist too as our paediatrician thinks
her condition might be genetic and neurological. She’s a year old now and
has only just learned to sit unaided. But despite all the obstacles she may
face, she’s such a bubbly, happy little girl.
She might not do things the normal way but she’ll do them the Poppy way. We’re
learning sign language with her as we don’t know how her speech will
develop.
I try not to think too far into the future. I did to begin with, but you end
up tying yourself in knots.
We don’t know whether what she has will have a severe or mild effect on the
rest of her life, so it’s impossible to plan. We concentrate on the here and
now.
This time last year we had no idea we’d end up with a baby with a medical file
bigger than she is. We’re all trying to find our way in the dark but seeing
Poppy overcome obstacles and find a way to do things every day is
incredible.”
“Remy went limp and he turned blue. I was terrified”
PROBATION officer Lynsey Woodell, 34, had son Remy eight weeks early last
year. Due on December 30, he arrived on November 8. Lynsey, who lives in
Dunstable, Bedfordshire, with her husband Marcus, 29, says:
“I was just 32 weeks’ pregnant when my waters broke in the supermarket. Remy
was only 4lb 9oz when he was born and he was taken straight to intensive
care. He needed help breathing, struggled to regulate his own body
temperature and got jaundice too.
He gradually grew stronger and came home two weeks later. He seemed fine to
begin with but just before Christmas he got a cold. It was around 10pm when
we knew we needed to get him to hospital.
He was assessed and sent to the children’s ward. Marcus and I were both
petrified as he seemed to be getting worse. I tried to feed him but he went
limp and his whole face went blue.
Marcus and I screamed for help and before we knew it Remy was surrounded by
doctors. It took them four attempts to intubate him because he was so small.
He then needed to be moved to St Mary’s in Paddington, West London, as it had
a paediatric intensive care unit.
They suspected meningitis and did a brain scan because there was a possibility
of brain damage but
he was eventually diagnosed with bronchiolitis. We felt so helpless watching
his little body battle the virus.
The nurses were fantastic though. After about a week in hospital, one of them
encouraged me to take an hour away from his bedside and go to a carol
concert to raise money for the unit. I didn’t want to leave Remy but I
returned feeling hope for the first time in days.
After ten days he started breathing on his own and after two weeks in hospital
he was allowed home in time for Christmas.
He’s still small, only 18lb, prone to chest infections and could be at risk of
asthma when he grows up. At this time of year, I’m reminded of just how far
Remy’s come.
This Christmas we’ll return to the carol concert, only this time he’ll be with
us.”
Donate to St Mary’s by visiting .
“The twins were so ill, last Christmas passed in a blur”
WHEN Andrea Richardson had twins Emme and Devyn prematurely on December 9
last year, the babies were left fighting for their lives. Andrea, 31, lives
in Middlesbrough with husband Mark, 35, eldest son Cole, five, and the
twins. She says:
When I was 36 weeks pregnant, I went to the toilet and all I could see was
lots of blood. I called an ambulance, was rushed to theatre and had an
emergency C-section then and there.
My husband Mark is a twin and we knew we were having twins. We’d already
decided on the names Emme and Devyn for them.
It turned out Emme’s placenta had ruptured. She was born first, with Devyn
arriving one minute later. They were 6lb 12oz and 6lb 13oz. When Devyn came
out, he couldn’t breathe properly, needed oxygen and was put in an
incubator.
It was really scary for us but within a few of days of being born, they were
both allowed home.
The first couple of weeks were bliss but when the twins were three weeks old,
I went to check on them after a feed and Emme was grey and unresponsive.
I called an ambulance straight away but by the time paramedics arrived, she
was barely breathing.
Doctors diagnosed her with viral bronchiolitis. They told us she was on the
fence – if a few more minutes had passed before I found her, she might not
have made it.
I was sobbing and asking if she was going to die but the doctors couldn’t even
say no. They just told us they had to take everything a step at a time.
Devyn was assessed and we were told he had it too, so he was put on a ward
and given oxygen. In intensive care, Emme’s whole body swelled because of
the morphine she was being given.
I couldn’t even recognise the beautiful little girl I’d given birth to a few
weeks before. It was heartbreaking.
The thought of Emme not making it and Devyn losing his twin sister so soon was
too much to bear. But after a week in hospital, she started to slowly
recover and began breathing on her own again. The twins were eventually
allowed home.
Last Christmas passed in such a blur because both Emme and Devyn were so ill
but we are planning to make this Christmas extra special – we know how lucky
we are as a family.