Morecambe baby loss family on mission to educate expectant mums
A mum who lost her unborn baby to a rare illness which nearly killed her has spoken out to raise awareness of the deadly symptoms she wants all expectant mums to look out for.
When Kelly Lewis first complained of indigestion and aching shoulders, she put it down to the fact she was a little more than three months pregnant.
As a first-time mum, Kelly was unaware of the severity of the symptoms, and just how dangerous they could turn out to be.
As the pains persisted, Kelly sought medical diagnosis, and was given reassurance that she had nothing more than a water infection.
However, Kelly was eventually diagnosed with HELLP syndrome, a rare condition among pregnant women similar to pre-eclampsia.
Her organs were failing and her life was at risk, and her only hope was for doctors to deliver her baby – at just 16 weeks.
Kelly, now 30, and her husband David now want to raise awareness of the illness in a bid to help other expectant mums.
And to mark five years since their unborn daughter died, Kelly and her husband David began a series of fundraising events on Friday with a 25km walk.
“It happened at 16-and-a-half weeks of my pregnancy,” Kelly said. “We had gone for the 12-week scan and everything was fine. Then I started becoming unwell and getting pain in my shoulders and a feeling like indigestion.
“Because it was my first pregnancy I thought it was normal but it got pregressively worse. It all happened really quickly.
“At first my symptoms were misdiagnosed as a water infection. It was only when I got really poorly and had further tests that they realised, and by then they had to deliver the baby or I would die.
“I went into the Royal Lancaster Infirmary for tests and had it explained to me and then I was taken to the delivery suite.
“I remember at one point I looked up at the doctors and said ‘am I going to die?’”
Kelly gave birth to a daughter, who the couple named Ellissia. Sadly, at such an early stage of pregnancy Ellissia could not survive.
“It usually happens much later so the chances of the baby surviving are much greater,” Kelly said.
As a result of Kelly’s case, the NHS altered one of their websites which had previously said HELLP syndrome could only occur at 20 weeks or later.
“When I came out of hospital and started researching it I saw that the NHS said it could not happen before 20 weeks and I am living proof that it can,” she said. “Because of me they have changed their website to say that it can happen earlier.
“I was still so poorly for the next few weeks, and because it wasn’t a miscarriage and it wasn’t a full-time stillbirth I didn’t know know to feel.
“Five years on I am still a bit baffled by it all.” Kelly and David, who live in Lancaster Road in Morecambe, went on to have a son, Jake, who is now three.
“There was a greater than normal risk for me but I was monitored carefully, and I had the same consultant and midwife which was nice,” Kelly said.
And the couple now wants to raise more awareness of the rare killer illness.
The main symptoms of HELLP syndrome are similar to those found in pre-eclampsia.
“I had aches and sickness and blurred vision, a feeling of indigestion and pains across the shoulder blades, which is a sign of liver problems,” Kelly said.
“The medical symptoms are high blood pressure and protein in urine.”
The pair hope to raise £1,500 to help refurbish the bereavement room within the maternity unit at the RLI, after being told by the bereavement midwife Celia Sykes that they are trying to fundraise to revamp, update and decorate the room.
The room allows people to spend final precious moments with their babies, and gives them somewhere to be cared for during and after devastating events.
“We are hoping to raise £1,500 towards the refurbishment,” Kelly said.
“I was in the delivery suite for four days because they didn’t know where else to put me so they could monitor me.
“On the final day I was put into the bereavement room. At the time I wasn’t really taking any of it in.
“It’s a calming and relaxing room with doors leading onto a garden.
“We thought it would be quite fitting with it being the five-year anniversary and to celebrate me still being alive because I so nearly wasn’t.
“I emailed them at the maternity unit to see if there was anything we could help with, and they said they were doing this.”
Kelly has previously raised money for Tommy’s charity and David did the 2013 London Marathon.
He will also be running Hadrian’s Wall on the weekend of May 20, while Kelly is planning to take part in a 10km run on June 4 followed by the two-mile Great North Swim on June 11. David is then doing an ultra marathon in the Lakes on July 1.
Kelly said: “I did the Great North Swim last year and I wanted to challenge myself even more. I am a keen swimmer but I am not a runner at all so it’s a huge deal for me.
“I also run an awareness page on Facebook for HELLP syndrome. So many people haven’t heard of it, even within the health system.”
To support Kelly and David, you can donate to the cause at https://www.justgiving.com/crowdfunding/RLImaternity
Kelly’s Facebook support page is called HELLP syndrome angels.