A family who lost their 12-day-old son after he was born prematurely are demanding NHS boards bring in urgent testing for pre-eclampsia.
The condition, which develops in the second stages of pregnancy, is currently not tested for in Scotland but is in other parts of the UK.
Ami and Stuart Geddes have launched Clark’s Campaign, which they hope will prevent others from going through the harrowing experience of losing a child.
The Renfrewshire couple lost their baby boy Clark when he was born 15 weeks early in 2021.
Mum Ami, who is a type one diabetic, became extremely unwell with pre-eclampsia symptoms.
She said: “We didn’t know right until the end. I felt unwell and I suffered for days and days.
“My blood pressure was climbing.
“At first Clark was doing great. We were really positive and thought was going to make it. But it just wasn’t to be. He was too ill.”
It wasn’t known Ami had the condition at the time.
‘It was the hardest moment of our lives’
Her husband was braced for the worst when she had to deliver their son early.
He said: “The doctor said to me, there’s ultimately a chance they both might not come out of this. That was a sobering moment to go from ultimately the happiest time of my life, welcoming in my second son to pretty much losing everything in the blink of an eye.
“It was the most unfair thing to go from being on an absolute high, of being a mum and dad again, having this complete family, to hitting the ultimate low, carrying a little box into the funeral home.
“It was the hardest moment in our lives.”
Pre-eclampsia can affect women during the second half of pregnancy or soon after their baby is born.
The cause is unknown but it’s believed to occur when there’s a problem with the placenta.
It can be fatal for mothers and babies if it’s not identified or managed correctly.
In Scotland, more than an estimated 5,000 pregnancies present with suspected pre-eclampsia every year.
Families and campaigners like the Geddes’ want the NHS to offer a blood test – which is already available in other parts of the UK – to diagnose the condition.
Ami believes being tested could have given their little boy a chance at life.
“I just always think a test would have made a difference,” she said.
“I felt I could try and keep him in that wee bit longer, but they had to take him out.
“One doctor came up to me and said, ‘you’ve got another boy to think about, who won’t have his mum anymore if you try keep him in’.”
It wasn’t the first ordeal the couple had to endure as parents.
Their eldest son, Camdyn, also born at 29 weeks was forced to fight for his life. They believe this was due to pre-eclampsia.
Ami’s likelihood of developing the complication again also meant their daughter Connie was delivered through a surrogate in 2023.
The couple, who have helped raise more than £50,000 for Clark’s Campaign, are urging the government to take action to help other families.
Ami said: “I’m absolutely furious. It’s so simple to add in to other tests being offered and it’s not being carried out.
“Babies’ lives are being saved in other parts of the UK and not here. It’s shocking in 2024.”
Stuart added: “No parent should ever have to attend their own baby’s funeral. We firmly believe any test available anywhere else in the UK has to be here in Scotland.
“Why are we missing out? What’s more important than saving a baby’s life?”
Action on Pre-eclampsia chief Marcus Green accused the Scottish Government of “massive inertia” over introducing tests, which he said would save money for the NHS in the long run.
He said: “Various health boards are coming up with reasons why they haven’t done it. The government said they would do a scoping exercise months ago; there has been no progress.
“Women are going undiagnosed. It means babies are being born prematurely. It means both women and babies lives put at risk.
“As a result of this not being implemented, premature babies are dying unnecessarily, leading to devastating consequences for families.
“Someone needs to grab the bull by the horns and get testing rolled out across Scotland.
“While they are not implementing this, women and babies are dying.”
A Scottish Government spokesperson said: “We expect all NHS Boards to ensure the SHTG recommendations on PlGF-based testing published on March 23 2023 are implemented effectively and consistently.
“While there are differences across Scotland, initial indications from NHS Boards have indicated that testing capacity and infrastructure pose challenges for implementation.
“We are initiating a new scoping exercise to further understand the current position in relation to using the PIGF test, and to inform what further support may be necessary to advance implementation plans.”
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