TO this day, Dawn Powell blames herself for the death of her newborn son, at just four days old.
Little Archie entered the world 16 minutes before his twin sister Evalene, on February 10 last year.
Cradling him, Dawn, 42, felt “ecstatic”. But hours later, with Evalene safely delivered, Dawn became concerned for her son.
“I remember saying he didn’t sound right,” the mother of five says.
“A member of staff said, ‘Oh, he’s singing to you’.”
But his grunts were a sign he had Group B streptococcus (GBS) — a bacteria mums can carry with rarely any effect on their own health but which infects about 800 babies a year at birth and kills around 50 by leading to sepsis, meningitis or pneumonia.
Just four days later, Dawn and husband Kevin cuddled their son as he slipped away, his tiny body overcome by sepsis.
But they are not alone in their torment — and even of those newborns who survive GBS, around 75 each year are left with long-term health conditions.
Charlotte Cleary’s little girl Aimee, now eight, faces the life-changing consequences of this. She had to fight for her life as meningitis took hold and now cannot walk or talk, as she battles a disability that will stay with her throughout her life.
£11 SWAB TEST CAN PREVENT AGONY
Their stories are all the more heartbreaking because neither mum had heard of GBS or had a clue they were carriers of the bacteria. Magnifying their heartache, a simple swab test could have prevented tragedy.
Now the charity Group B Strep Support (GBSS), set up by mum Jane Plumb more than 20 years ago after she lost baby son Theo to GBS, is campaigning to raise awareness among expectant mums, many of whom are never warned they might be carriers.
The NHS does not routinely test mothers-to-be for GBS, instead using a risk-based prevention strategy.
Tests could cost the health service around £11 each if rolled out on a major scale, previous data has shown. And tests can be bought privately for around £35 each.
That has led to calls from charities and medics for all pregnant women to be tested before they give birth.
‘I HELD HIM AT THE END, WE WERE TOGETHER WHEN HE SLIPPED AWAY’
Just four days after Archie was born, Dawn and her husband Kevin Powell, 52, from Margate, Kent, held their son for the final time. Tests revealed that Archie had been infected with GBS, which in turn caused severe sepsis.
He was the couple’s first son, twin to Evalene and baby brother to their daughters Kienna, 12, Aralyn, ten, and Lyara, nine — as well as Kevin’s two older daughters from a previous relationship.
Despite Dawn’s three previous pregnancies, neither she nor Kevin understood the dangers of GBS before the twins’ birth.
“Thinking back, they once said ‘Are you GBS positive?’” Dawn says.
“I said no because I didn’t really know what it was and I hadn’t been told about it.”
The pregnancy had gone well and the couple welcomed Archie and Evalene at Queen Elizabeth The Queen Mother Hospital in Margate.
Dawn says: “I held Archie straight away. He was skin-to-skin for quite some time. Evalene had the cord round her neck, so initially she was the concern and not Archie.”
Hours later, they first noticed Archie was making distinctive grunting noises.
Dawn says: “Now, when you read up on all the Group B Strep symptoms, grunting is a sign of respiratory distress.”
Archie was transferred to special care after doctors found his body temperature and blood-sugar levels had dropped.
“The consultant then told us he was in a very serious condition,” Dawn says.
Archie was taken by ambulance to the Evelina London Children’s Hospital, with Dawn and Evalene following later.
“Kevin said he got to London and there were about 12 people waiting for them,” Dawn says.
“At one point he couldn’t go in the room because they were resuscitating Archie.”
PARENTS’ HARDEST DECISION OF ALL
Ruling out a perforated bowel or issues with Archie’s heart and lungs, tests finally found he had contracted GBS and sepsis, which was ravaging his organs.
Dawn says: “I was in shock. You pretty much blame yourself because they’ve picked it up from you. Still, to this day, I still blame myself.”
A CT scan showed Archie had very little brain activity, forcing Dawn and Kevin to make the hardest decision of all.
“They said he could be kept alive on life support but it was our decision,” Dawn recalls.
“When they told us what his life would be like — he wouldn’t be able to see, hear, eat or anything, he was effectively brain-dead — we knew he’d be a shell. We made that decision. We didn’t want him to suffer.”
TEST ALL MUMS-TO-BE
Archie’s life support was switched off on February 14, after his older sisters said goodbye.
“I held him at the end, we were together,” Dawn says.
Now the family is aiming to raise awareness of the dangers of GBS.
She adds: “Every mum should be told about it and have the option to buy a private test. Long-term, it should be pushed out by the NHS.”
Dawn, who gave up her job as a teaching assistant following the trauma, continues: “Losing Archie is a pain I’ll always carry with me. Every time his twin sister Evalene reaches a new milestone, I’ll think, ‘Archie should be here beside her’.”
‘I COULD HEAR HER PIERCING SCREAMS’
When Charlotte Cleary, 31, from Walsall, welcomed her daughter Aimee Heath on July 23, 2011, everything seemed perfect. But days later, her world crumbled when Aimee was left permanently disabled and battling quadriplegic spastic cerebral palsy.
Her pregnancy was “a breeze”, Charlotte says, yet despite several scans, she says she was never warned about GBS. Except for a small bout of jaundice, Aimee appeared fine for the first few days.
“She was slightly unsettled but I thought that was normal,” Charlotte says.
“But on the fourth night or so, I started to get worried. Aimee hadn’t been sleeping very well and she wasn’t feeding well.”
Charlotte called the midwife, who took one look at Aimee and called an ambulance, fearing she was dehydrated and appearing limp.
Arriving at New Cross Hospital in Wolverhampton. things took a turn for the worse. Doctors told Charlotte her daughter needed a lumbar puncture, or spinal tap.
‘I FELT SO BAD, I’D GIVEN IT TO HER’
“I didn’t know what that was,” Charlotte says.
“They took her into a treatment room and sat me in a private room opposite. All I could hear were her piercing screams. I’ll never, ever forget them.”
How bacteria affects newborns
WHAT IS GROUP B STREP? GBS is a type of bacteria that can cause fatal infections in newborns, leading to sepsis, meningitis and pneumonia in some cases.
Up to 40 per cent of women carry the bacteria in their intestines, rectum or vagina.
It rarely causes any harm to Mum but the danger comes during birth, when it can pass to a newborn. It is the most frequent cause of severe early-onset infection in newborns, according to the Royal College of Obstetricians and Gynaecologists.
HOW MANY BABIES ARE AFFECTED? While most babies will be unaffected, one in 1,750 will develop GBS.
Oliver Plumb, of the charity Group B Strep Support, says: “About 800 babies fall ill each year and about 50 die. Roughly 75 are left recovering with some sort of long-term condition. It’s awful.”
While RCOG guidelines dictate that all expectant mums should be told of the risks of GBS, many say they have never heard of it.
WHAT ARE THE SYMPTOMS IN NEWBORNS? Newborns with GBS might start grunting or moaning, seemingly struggling to breathe.
Other signs include:
- Being very sleepy and/or unresponsive
- Inconsolable crying
- Being unusually floppy
- Not feeding well or keeping milk down
- Have a high or low temperature, and be hot or cold to touch
- Changes in skin colour
- An abnormally fast or slow heart or breathing rate
- Low blood pressure or blood sugar, following hospital tests
ARE YOU AT RISK? Mums who go into labour prematurely (before 37 weeks) are at risk, according to the RCOG.
Nearly a quarter of all cases of early-onset GBS in newborns in 2015 were in babies born prematurely, according to RCOG. Other risks include Mum having a GBS urinary infection during pregnancy, or a previous baby having tested positive for GBS.
In these cases, women will be given IV antibiotics during labour, lowering the risk of transmission from Mum to baby by as much as 90 per cent.
WHAT ABOUT TESTING? The test itself is non-invasive, with expectant mums undergoing a lower vaginal and rectal swab.
Oliver explains that currently, tests are carried out on women who carried Group B Strep in a previous pregnancy.
HOW CAN WE STOP AVOIDABLE DEATHS? GBSS is pushing for more awareness among expectant mums, so they know the risks and can choose to pay for a test if they wish.
Longer-term, GBSS hopes testing will be rolled out to all expectant mums through the NHS – before a vaccine is hopefully created in the future.
After Aimee began fitting, she was taken to a high-dependency room next door. Shortly afterwards, Charlotte was informed Aimee had severe meningitis.
“My world just crumbled. I completely broke down,” she says.
“They told me it was a 24-hour critical window and she possibly had a five per cent chance of survival.”
Five days later, Charlotte received more devastating news: GBS had caused Aimee’s meningitis.
“I said, ‘What’s that?’. They explained to me I was the carrier and that I passed it on to her.
“I just felt awful. I felt so bad I’d given it to her. It was horrible.”
Follow-up tests showed that while Aimee’s hearing and eyesight were unaffected, she was not hitting vital milestones such as sitting up and crawling.
When Aimee was nine months old, Charlotte was told her little girl could have cerebral palsy. She quit her job at a nursery to dedicate her time to caring for her daughter.
‘I WISH I’D PAID £35 FOR A PRIVATE TEST’
It was then Charlotte came across the charity Group B Strep Support.
“It blew me away that I could have had a test privately for £35,” she says.
“If only I’d known, I could have paid for it. What’s £35 compared to what I’m having to live with now?”
But in spite of everything, Aimee has now surpassed the doctors’ predictions. She can sit up unaided and eats one small meal a day, relying on a feeding tube the rest of the time.
“Her condition is limiting,” Charlotte says. “But she laughs all the time. She’s such a happy, smiley little girl.”
A few months ago, Charlotte was delighted to learn she is pregnant again, with her new partner.Understandably, she is nervous about giving birth.
But she knows she will be given antibiotics to reduce the baby’s risk of contracting GBS.
This time around, Charlotte knows the risks and the potentially devastating consequences. She knows, too, it can be prevented.
Her wish, and Dawn’s, is that every mum-to-be knows it.
On call with Dr Zoe
Fab Daily columnist and TV doctor Zoe Williams advises here on what to worry about, and not to worry about, when your baby is poorly – and when to take them to a doctor.
AS a parent, you are instinctively hardwired to worry about your baby. And being a GP, I have heard just about every concern there is.
Most little ones will become poorly at some point, especially in their first year, as they are busy building up their immune system. But harrowing stories like those shared by Dawn and Charlotte are enough to leave any mum terrified.
It is important to remember, however, that that they are rare. Most of the time, when your baby falls ill it will be a minor bug that passes. Babies are robust little things.
But I get asked a lot by worried parents: “How do I know if I should really worry?”
Here is my advice to them:
1. Trust your gut
THIS one is not so much a sign as a feeling, deep in your gut. I tell my patients is to trust their instincts, which are powerful things.
It can be hard sometimes to tell if your child is ill. But you know them better than anyone. That means you are much more likely to spot when something is seriously wrong.
2. Playing up
THE hardest thing about having a poorly baby is the fact they can’t tell you what is wrong. So watch out for a change in behaviour. Have you noticed they are sleeping longer than usual?
Or perhaps you are struggling to get them up for a feed? If they are drowsy, sluggish or not as responsive to stimulations, they could be ill.
If their energy levels have dipped, it could be a sign of cold or flu. Alternatively, it could be something more serious, such as meningitis.
3. Non-stop crying
AT a very young age, crying is a baby’s only way of communicating.
Different cries mean different things – from hunger to wanting a nappy change . . . or simply being in need of a cuddle!
As a parent, you will gradually get to know what each one means. If they are crying inconsolably, it could be colic, when they cry non-stop for a prolonged period.
But if they are fussy and crying for prolonged periods, it might be something more serious, such as abdominal pain, an earache or an infection. In that case, best see the GP.
4. Hot to touch
WHEN it comes to little ones, a normal temperature is 36.4C, but this will vary slightly.
A baby’s temperature is considered high if it is 38C or above. You can generally tell – if their skin is hotter to the touch, sweaty or clammy, and they have flushed cheeks.
If your child is quiet and listless or younger than eight weeks, it is worth seeing your GP.
5. Other signs
THERE are other warning signs that are worth paying attention to, including:
- Blue, pale or blotchy skin
- Rapid breathing or panting
- A throaty noise when breathing
- Your child is finding it hard to catch their breath, and is sucking in their tummy under their ribs
- If your child is hard to wake up or seems confused
- Green vomit
- Your child has a seizure
- Your baby is under eight weeks old and doesn’t want to feed
- Nappies are drier than usual (a sign of dehydration).
If your child has any of these signs, get medical help as soon as you can.
You can call your GP practice, NHS 111 or, if you are really worried, go to A&E.
When it comes to the most precious things in your life, it pays to be vigilant.
GOT a story? RING The Sun on 0207 782 4104 or WHATSAPP on 07423720250 or EMAIL [email protected]
Source: Read Full Article