When Deborah’s son Callum passed away, she wasn’t expecting to lose her house as well…

NHS blunder led to payout, but when Cullum died, they wanted it back

As the probe was moved over my bump, my baby flashed up on the monitor and the sonographer turned to me with a huge smile. “He looks so healthy,” she said, “He’s forming well for such a young gestation age.” I breathed a sigh of relief. “I told you,” my husband, Stuart, 35, said reassuringly.

Like most first-time mothers, I was fretful that something would be wrong with my baby. But I had more to be worried about than most. From a very early age I suffered with severe epilepsy and was prescribed anti-convulsion medication to help reduce the fits. It worked and the severity of my epilepsy diminished. But the anti-convulsion drugs came with side effects. They were renowned for causing complications to women of child-bearing age, so when Stuart and I found out I was expecting, our fears were more pronounced. I was advised to have as many scans as possible to keep a keen eye on my baby’s development.

Thankfully, every time we were given good news. We had four different sonographers and they all agreed: our unborn child looked very healthy. But my body was reacting strangely to the pregnancy and three weeks before my due date I developed preeclampsia and had to be induced to avoid complications. Luckily, labour was over quickly, and when baby Calum was born, the midwife wrapped him in a towel and passed him to me.

“He’s perfect,” I gushed. Stuart gently planted a kiss on my forehead – I felt so blessed. “Let me just give him a rub down,” the midwife said. “Just to clean him up.” She took Calum off me, but as she began cleaning him, the towel fell down and there was a huge red blister on his back.

“What the hell’s that?” Stuart exclaimed. Without answering, they quickly wrapped Calum up and medics began rushing into the room. Calum was whisked away. Doctors came over to explain the situation, but made absolutely nothing clear. I heard the words ‘back’ and ‘not formed properly’ in one sentence, but it didn’t seem to make sense.

Calum was transferred to Addenbrooke’s hospital in Cambridge. We’d had enough of not being told what was happening and demanded to know exactly what was going on. We were sat down and told Calum had Spina bifida and hydrocephalus – a condition which causes water on the brain. His back hadn’t grown properly over his spine leaving what looked like a huge red bubble and he needed surgery. The operation would be touch and go at best.

We were scared. But luckily, after a nine-hour operation, Calum was OK and after weeks in hospital we were able to bing him home. Over the next few months, he developed symptoms that baffled doctors. His eyes were unresponsive and he had a lump on his head from the hydrocephalus which they had to withdraw by inserting a needle into his skull.

We even thought he had club foot – but after looking at all his symptoms online, they all pointed to the same thing – fetal valproate syndrome caused when the foetus is exposed to valproic acid during the first three months of pregnancy. I couldn’t believe it. I knew immediately that it was from the Epilim drug I’d taken for my epilepsy.

I called Stuart over to the computer, he was just as dumbstruck. “How did they not see that in the scans?” he said quietly. We were told that everything was fine with our unborn child – that we had nothing to worry about. But it wasn’t until, during a brief stay in hospital with Calum after he had contracted the flu – a virus that could easily have killed him – that I was given some advice that would change my life.

The woman whose child lay in the bed next to Calum’s turned to me and said, “I know you’re not thinking about it just yet, but get a solicitor.” “A solicitor?” I said quizzically. She said: “You’ll be surprised at how quickly the costs of taking care of a disabled child can add up.” I suddenly realised what she was saying to me. I had thought about it, but I hadn’t voiced my thoughts – not even with Stuart.

We were growing apart, the stress of the situation was driving him away. I knew it at the time, and I was spending almost every waking hour with Calum. After a year, Stuart walked out. But not before we had been to speak to a solicitor. When Calum was seven months old, we were told we had a very strong case for negligence and wrongful birth.

Specialists were brought in to look over the scans from my pregnancy. They pointed out a very clear hole that showed on Calum’s back, in each one of the scans. Once it had been pointed out to me, it was so obvious. “How have four sonographers and endless doctors missed this?

” I cried. But no one had the answer.

What was worse was I wasn’t given the choice to terminate with the pregnancy. Knowing what I should have known at the time could have changed everything. I was also told that Calum should never have been born naturally, because of his condition, I should have had a caesarean. The solicitors sued the NHS trust at Bedford hospital for wrongful birth, they admitted negligence and agreed to pay for a lifetime of care. We would have money to give Calum the best life we possibly could.

Since his birth I hadn’t worked, but had been looking after him 24/7 and money was tight. But they wanted to wait until Calum was eight before they were willing to pay out in full as they wanted to know what his life expectancy would be and what he would need going forward. A few years passed and we were finally given £105,000 as part of an interim payment. It was a life saver. The annual cost of Calum’s care was reaching £100,000 – much more than we could cope with.

At the time we were living in an unsuitable cramped bungalow that, as Calum grew, was rapidly becoming too small for us. Since Stuart had left, I had met another man – Damien, who I quickly fell head over heels for. Calum loved him too and it was great to have that male presence in his life. We invested £450,000 of the second instalment of the interim payments, which was £550,000, in a new home when Calum reached his fifth birthday. He absolutely loved it.

It was big enough for the three of us and had enough room for Calum to crawl around in big circles on the ground, as was his way, with a big grin on his face. With a few adaptions, and a carer to help me look after him, the money was put to good use. We received another instalment of £50,000 which we used to make life easier for Calum – adaptions to the house and car.

One night, when Calum was six, Damien and I had decided to have an early night. But at 11pm, Damien woke up shouting. “Calum, Calum,” he yelled, over and over again. “It’s fine babe,” I whispered, rubbing his back. “You’re just having a bad dream.” He was drenched with sweat and really alarmed. A few hours later, at about 3am, I woke up. As soon as I opened my eyes I knew something was wrong.

I ran down the stairs and as I stood outside Calum’s room, I could hear a strange tapping coming from inside. I shouted to Calum twice, but nothing happened. Usually, he would wake up immediately and climb up the side of his cot to see me, but this time there was just silence. I ran over to his cot and got the shock of my life. Calum was fitting so violently, his hand was banging against the side of the bed frame.

“Damien, ring an ambulance, right now!” I yelled. He came running in as I leaned into the cot to try and pick Calum up. Because of his condition, Calum was unable to walk, so over the years he’d put on few pounds and was quite big for his age. Damien helped me lift him onto a bean bag. But his seizure was relentless. I knew that when you have an epileptic fit your body goes rigid, but Calum’s was limp and lifeless.

I began panicking and screaming. I couldn’t understand what was happening to my son. He looked so alarmed and terrified. When the ambulance arrived they couldn’t stop his seizure, even after plying him with medication. We were all rushed to the emergency room.

But even after arriving at hospital his seizure had been going on for more than half an hour and still couldn’t be stopped. “We’re going to have to put him under,” the doctor said. “It’s the only way we can stop him fitting.” I was terrified. I knew the situation was serious, but I refused to believe it was fatal.

In complete denial, I kept telling myself he was going to be fine – that he would fight his way through it. Then the doctor delivered devastating news.

“I’m afraid his organs are shutting down one by one,” he said. “It’s only a matter of time before his heart shuts down.” I burst into tears and could barely stand on my own feet.

Over the next few hours, my family arrived to be at Calum’s bedside. But he wasn’t getting any better. The next day doctors told us there wasn’t much time. Damien, my mum and I were with Calum as doctors turned the machine off. They took out all the wires and placed him in my arms. Moments later the life just drained from him and he passed away. I was utterly devastated. I had lost not only my little man, my son, but my best friend.

When we went back to the house, it just seemed so big and empty, full of memories of Calum – his toys, his clothes, his smell. He was everywhere. But it made me feel as though he was still there. I could feel him throughout the house which he loved so much. So I was heartbroken when I received a letter from the hospital’s solicitors – just three months later – demanding I pay back almost half the money they had given us: £330,000 of back-dated payments for Calum’s care.

“It’s so soon. Have they got no respect?” Damien said. We spoke with solicitors immediately who advised us to sell the house which would cover the costs and leave me money left over. We were told that because Calum had died, the settlement was null and void.

It feels like I’m being penalised for my son dying. I miss him every day. He was the most beautiful boy in the world and he brought me so much joy, but I watched him suffer.

And now we’ve been given absolutely no time to grieve.

Every parent who’s lost a child knows how bad it is, but to lose the house where that child grew up, where he was most happy – all those memories, all those things we did together, gone – it’s unthinkable.

Our solicitor, Adam Copeland, said Calum’s death was unforeseen and he wanted to make sure we receive a fair settlement after “nearly a decade of heartbreak.” He said: “A potential deadline comes around in July and we don’t know what the situation is going to be. “I don’t think anyone is going to physically kick her out. The negotiations are still on-going in regards to that.”

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