Couple who lost son to rare brain cancer celebrate birth of baby 'designed' to be free of the disease
01:30 GMT, 8 October 2012
A couple who lost their son to a rare brain cancer have welcomed the arrival of a 'designer' baby after having treatment to stop him inheriting the deadly disease like his brother.
Nicky and Neil Halford, both 36, were left heartbroken when their son Ben, five, lost his three-year battle with cancer.
Mrs Halford is a carrier of the rare Li-Fraumeni cancer gene and fought off breast cancer at the age of 21.
Overjoyed: Nicky and Neil Halford, both 36 and from Coleford, Somerset, with their designer baby Tom
But the couple, from Coleford, Somerset, didn't know the gene existed until Ben's diagnosis.
When the little boy asked his parents for a sibling before he died, it left with them with an impossible decision – have another child and take the risk or deny him his wish.
Then doctors told them they could have special IVF treatment, where embryos are screened for the faulty gene before being put back into the womb.
The controversial treatment means that a baby can be born free from cancer that it would otherwise inherit. Only two embryos were suitable for testing – one had the gene, the other didn't.
The second embryo was implanted into Mrs Halford and two years after the loss of Ben, the couple have given birth to a boy, Tom.
Mrs Halford said: 'We only had one embryo so it really was one chance. We tried not to get our hopes up. We'd been through so much that we felt if it's meant to be, it's meant to be.
'When I found out I was pregnant, we both burst into tears.'
Before the couple had Ben, they visited Mrs Halford's consultant to ask if their children may get cancer because she had been so young herself when she had the disease.
Nicky and Neil's son Ben, who tragically died aged five from a rare brain cancer. The couple, from Coleford, Somerset, didn't know it existed until Ben's diagnosis
Baby Tom was born after having treatment to stop him inheriting the deadly disease like his brother
But they were reassured it was just a 'fluke' although, they were told they would probably struggle to conceive because of the effects of Mrs Halford's cancer treatment.
Mr Halford said: 'We didn't want to pass on anything to our child so that's why we asked the question. When Ben was born he was healthy for the first 18 months.
'It was only a month later that things gradually started changing. He became irritable. He was crying for no reason. We were told it was just the terrible twos.'
Then Ben kept losing his balance so his parents took him to the hospital. The couple were then given the devastating news that he had a tumour the size of a grapefruit in his brain.
Nicky and Neil with Ben celebrating his first birthday. He went on to have a three-year battle with cancer
Surgeons were able to remove 95 per cent of the tumour and Ben was given chemotherapy to reduce the rest.
After Ben's diagnosis, Mrs Halford insisted doctors ran and it was then it was discovered they both had the faulty gene.
Mrs Halford said: 'I knew it couldn't be a coincidence. I felt so guilty. I blamed myself.'
The gene is so rare there have only been a handful of cases in the UK. It makes sufferers more susceptible to cancer, especially leukaemia, brain and breast cancer.
A scan in September 2007, showed Ben's tumour had gone but three months later, it had grown back. Doctors operated for a second time and Ben underwent a course of radiotherapy in early 2008.
The couple with a picture of Ben and their new son Tom. In October 2010, a month after a dream trip to Disneyland, Ben tragically died
It appeared Ben had beaten the cancer and it was around this time the couple started talking about having another baby.
Mrs Halford said: 'I'd asked Ben if he would like another brother or sister and he said yes. He said yes – baby Tom. I said to Neil: “Let's hope it's not a girl then.”
'We started looking at what we could do. The genetics team at the hospital talked to us about our options. We could take a chance but why should a child go through that'
They applied for funding to pay for the selective IVF treatment, which is known as Pre-Implantation Diagnosis (PGD), and a year later they found out they were eligible.
'I've heard of people trying to choose the sex but this was life or death. We couldn't watch another child suffer like Ben did.'
Tom's father Neil Halford
But during that time Ben's cancer returned and the couple put their IVF plans on hold.
Surgeons removed the tumour and Ben remained cancer-free for almost a year.
Mr Halford said: 'He had his best year but in January 2010, the tumour came back yet again. This time surgeons couldn't operate because it had spread.
'Ben had treatment to shrink the tumour but he started to have it. He knew it wasn't working. He'd had enough.'
In October 2010, a month after a dream trip to Disneyland, Ben tragically died.
The couple decided to wait a year before starting the IVF treatment and, in October last year, they travelled to a clinic in London.
Mr Halford said: 'They managed to get seven eggs. We lost all of them except two. We had to wait 48 hours to test for the faulty gene.
'One had the gene and the other didn't it. It was our one hope. Our only chance.'
The embryo without the defect was then implanted into Mrs Halford's womb and two months later, she fell pregnant.
Despite the good news, they said they both felt a mixture of emotions.
Mrs Halford is a carrier of the rare Li-Fraumeni cancer gene and fought off breast cancer at the age of 21
Mrs Halford said: 'I found it very hard because of the memories it brought back. People would ask if the baby was going to be a brother or sister and I would have to explain.
'When we found out we were having a boy, we both broke down. Ben had been right all along. I stuck a picture of Ben to the front of my folder in hospital and told people I was happy to talk about him.
'Tom looks like Ben when he was a baby. He's a bundle of joy. Nothing will ever replace Ben though. We'll never forget him. We still think about him every day.'
Thanks to the treatment, eight-week-old Tom now faces only a four per cent risk of developing cancer instead of 50 per cent.
Mr Halford said: 'Some people are against it because they say science should not mess with nature.
'We wanted to give the best possible chance – that's the reason we had to do it. I've heard of people trying to choose the sex but this was life or death. We couldn't watch another child suffer like Ben did.'
This week marks the two-year anniversary of Ben's death and the couple have set up a charity in his memory to provide rehabilitation equipment for seriously ill children in hospital.
They have raised £35,000 for three different hospitals so far.