A mother given compensation to care for her seriously disabled son is facing selling her home after the NHS asked for money back when her son died.
Deborah Mackay sued Bedford Hospital NHS Trust after scans failed to detect spina bifida in her unborn baby Calum, depriving her of an the choice to terminate the pregnancy.
The Trust admitted negligence and agreed an out of court settlement beginning with £705,000 of interim payments with a final figure to be set when Calum reached 10.
Deborah, 33, was free to spend most of the money on a specially-adapted home where Calum could be provided with full-time care.
Experts predicted a normal life expectancy for the youngster but he suddenly died from organ failure, aged just six, in November 2011.
Deborah - who had been living in an unsuitable cramped bedsit before Calum's birth - had spent the rest of the money on looking after her son during his brief life. But three months after his death she received a letter from Bedford Hospital asking for almost half their money back.
Health bosses said £330,000 of the original pay out was rightfully theirs because it was only intended to pay for Calum's care, which he no longer needs.
– Deborah Mackay
"Three months after he died I was told to start paying back the money because Calum had not lived as long as they expected him too.
"It was not enough that I was grieving - I had just lost my son and then they pulled the rug out from under me again.
"They advised I put the house on the market and return a large proportion of the sale to the hospital.
"It feels like I am being penalised for my son dying."
Deborah knew from early on in her pregnancy there was an increased risk her baby could have life-limiting conditions because of the medication she was taking for her epilepsy.
She underwent several routine and specialist scans but Calum's problems went undetected and she was told everything was okay. She was devastated when her baby was born with spinal bifida and hydrocephalus, which causes water on the brain.
Just minutes after his birth Calum was rushed to Addenbrookes Hospital, Cambs, for a life-saving nine-hour operation on his spine.
The struggle of copying with his crippling illness put a strain on her marriage to husband Stuart, 35, and the couple split up a year after Calum was born.
After a string of health problems Calum was diagnosed with a rare disorder called fetal valproate syndrome, caused when the foetus is exposed to valproic acid during the first three months of pregnancy. The acid is found in a drug used in the treatment of epilepsy to control seizures but only causes problems for a small percentage of pregnant women.
Deborah sued Bedford Hospital for "wrongful birth" claiming they had taken away the right to make a properly informed decision on terminating her baby.
The hospital trust admitted negligence and agreed to pay for a "life-time of care" for her son beginning with interim payments, ahead of a final settlement when Calum turned ten. Had the case ever gone through it was due to reach several millions with Deborah potentially receiving an estimated £6 million for a lifetime of care for the youngster.Deborah invested £450,000 of the interim payments in a new home for her and Calum in the belief the property would be in her name for life. But just three months after Calum passed away letters from the hospital's solicitors came asking she pay back £330,000 of back-dated payments for her son's care.
Solicitors have advised her to sell her home, which would cover the costs and leave her with £75,000 to keep as part of a new settlement.
"If had known how poorly Calum was going to be I may have considered a termination but that choice was taken away from me.
"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."
Deborah's solicitor Adam Copeland said Calum's death was unforeseen and he wanted to make sure she receives a fair settlement after "nearly a decade of heartbreak."
The NHS yesterday said the repayment to the public purse was necessary because the final settlement was more than the interim money already paid to Deborah.
– Spokeswoman, NHS Litigation Authority
"The NHS Litigation Authority and NHS Bedford Trust appreciate this is a difficult time for Ms Mackay.
"We also have a responsibility to safeguard public funds, there are no plans currently to force a sale of this property."