When my 15-month-old son Louie got poorly, I thought it was just a sickness bug.
Little did I know that it would cost him his life – or that it would soon take my daughter, too.
For a couple of days, we thought he had a virus of some sort. When he showed no signs of recovery, we took him into A&E as we were starting to get worried. He wasn’t drinking enough and had no energy.
Eventually a doctor told us he was very ill and Louis was put on a drip.
We were told that he’d gone into septic shock, which is a life-threatening condition that causes blood pressure to drop dangerously low. It happens after an infection, and causes organs to fail as they don’t get enough blood to them.
Louie died on 30 April 2006.
It turned out that an infection had got into his bloodstream. We didn’t find out until his post mortem that he had Streptococcal septicaemia group A.
Before we lost Louie, we talked a lot about moving abroad. Soon after his death, we decided to sell our house and move to Spain, trying a change of scenery for our other two kids after such a tough time.
Looking back, it was our escape – we were probably running away. We were in shock for a long time after losing our son
Having Jake, then four, and Libby, then two and a half, was a godsend as it meant I had to carry on – giving up and falling apart wasn’t an option for a mum.
But in October 2008, just two and a half years after Louie died, Libby came down with a sickness bug. We were in Spain at the time trying to make the most of our new life.
We were very worried and took her straight to the doctor. They told us to keep an eye on her as she was very subdued, but they thought she seemed OK.
We told doctors how Louie had died – they reassured us that she wasn’t as ill as him. But they were wrong.
We took her home where she seemed to perk up a little, but like Louie, she had no energy and just wasn’t her normal self.
My gut feeling was that she wasn’t getting any better so we took her to hospital. All I could think about was losing Louie, and how we didn’t want to go through the same pain again as a family.
It happened so quickly. She was in a room with the doctors and we were made to wait outside. Then they came out and told us she didn’t make it. It didn’t feel real – how could this be happening again?
She had the same illness as Louie – Streptococcal septicaemia A.
It was only years later when we saw an immunity specialist doctor that we found out why Louie and Libby had died.
We were back in the UK in Manchester, and I wanted to get Jake a full health check to see if he could be in danger, too.
While they didn’t know the exact genetic condition that caused Louie and Libby’s deaths, they told us if we had any more children there was a chance it could happen again.
Thankfully, the specialists thought that as Jake was now almost a teenager, he was out of the danger zone, as younger children are more at risk.
I buried a lot of grief as it was too painful to think about our losses. I focused all my energy on us as a family. I started working for my husband’s business as I wanted a job with the flexibility to allow me to be with Jake if he became ill.
I spent so much of Jake’s childhood in a constant state of anxiety, always worrying about losing him.
I kept busy as much as I could to distract myself – I was also dealing with the sadness of our decision not to have any more children, in case they too were affected by the gene.
Even when we had three children, my husband Paddy and I always talked about wanting more, and even talked about adoption. Now knowing the risk of illness to any biological children, it made perfect sense to follow this latter path.
We went on to adopt our daughter, who was 19 months old at the time. It felt amazing to have another ball of energy join our family.
We missed the juggling and chaos of having a houseful of kids. Jake was amazing with our daughter, he was so excited and was so good with her. She brought hope to our family again.
A couple of years later, we went through the adoption process again to adopt another child, who was then eight months old.
They’re now 12 and six – both are full of energy, love being outside and running around, and are very confident and happy girls. All three siblings are really close and get on really well – well, most of the time!
The girls know all about Libby and Louie – we talk about them all the time, and have photos of them around the house. My middle daughter talks about them and tells people they are her siblings.
But despite the happy life I was able to build, that sense of loss never leaves you, and that’s why I’m so pleased to have discovered grief coaching.
I fell upon BREATHE coaching, a technique to help people regain control of their lives after loss.
It’s a mixture of breathing and relaxation techniques, and looking at how to handle grief – it covers all sorts of things like your mindset and goals, personal strengths and weaknesses and the support network around you.
It helped me, and now I feel able to help others by offering coaching programmes for women to help them on their journey with loss.
I feel like I have found my purpose – that this is what I’m meant to be doing, using my story and my own life experiences to help as many people as I can.
For our family, we try to focus on having as much fun as possible, and have an open relationship with the children so they can talk to us about anything.
We know better than anyone that we are here for a good time, not a long time – and we’ll always have Libby and Louie in our memories.
As told to Haddy Folivi
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