IT had been a normal pregnancy for Jane Plumb and she and her husband Robert were looking forward to the birth of their second child.

However, when Theo was born at Princess Royal Hospital in 1996, it immediately became clear something was very wrong and the youngster was immediately transferred to the special care baby unit at the Royal Sussex County Hospital in Brighton.

Mrs Plumb, 57, from Lindfield, near Haywards Heath, said: “They were doing everything they could to help him but he wasn’t responding and they were running out of options.

“When they asked if we wanted him to be christened, we realised just how serious it was.”

The couple arranged for their other son Oliver, then three, to come down to the hospital and see his brother for the ceremony.

The youngster was then taken off the machine he was hooked up to and the family given time to say goodbye,

Mrs Plumb said: “We took turns holding him and talking to him. We were squeezing in a lifetime of love in a couple of hours.”

As the couple left hospital following Theo’s death, they were told by a specialist that they thought he might have had a condition called Group B Streptococcus.

The couple had never heard of it and once they got home they spent ages hunting through all their pregnancy books and literature.

Mrs Plumb said: “We could find absolutely nothing about it anywhere. These were the days when the internet was still in its embryonic state so it was not easy to get information there either.

“We eventually came across some information in the US but there was absolutely nothing in the UK.”

It was only when the couple heard about a medical microbiologist caked Robert Feldman, who was carrying out research into the condition (also known as GBS), they began to get some more answers about what happened to their young son.

GBS is a normal bacterium which affects between 20 to 30 per cent of adults in the UK, usually without symptoms or side-effects.

However it can occasionally cause infection, most commonly in newborn babies.

Roughly 75 per cent of GBS disease is early-onset, occurring in the first six days of life and recognised cause of premature delivery, maternal infections, stillbirths and late miscarriages.

Overall, without preventative medicine, GBS infections would affect an estimated one in every 1,000 babies born in the UK.

Therefore, based on 700,000 babies born annually in the UK, approximately 230,000 babies would be born to mothers who carry GBS, one in eight would become colonised and 700 would develop infections.

Of those 700, 75 would die and survivors are likely to suffer long-term mental and/or physical problems.

These can include mild to severe learning disabilities, loss of sight, loss of hearing and lung damage.

Mrs Plumb said: “We were amazed at the lack of information and we told Robert there should would be a charity or support organisation set up to help with the work he was doing and to spread the word.

“He agreed and suggested we do it. Things just went on from there.”

The couple set up Group B Strep Support and quickly began work setting up a medical advisory panel so they could ensure all the information they were putting out was accurate,

The response to the charity’s work was immediately positive.

Mrs Plumb said: “There really wasn’t any information out there. There was nothing for parents and limited information for health professionals.

“Many GPs and consultants had never heard of it.

“We targeted as many people and organisations we could think of to spread the word. This included charities that supported families with newborns and those supporting the bereaved.

“The response was very positive. There was clearly a need for what we were doing.”

What has frustrated Mrs Plumb and charity supporters is that cases if GBS infection are preventable if the mother is screened for the infection towards the end of her pregnancy and given antibiotics.

Although offering routine screening for GBS is a practice used in other countries, the UK has yet to adopt it.

One of the arguments against offering a national screening programme and treating all pregnant women carrying GBS with antibiotics are the fears it could do more harm by building up antibiotic resistance, a public health risk.

Group B Strep Supports counters this by pointing out all countries who offer routine testing have reported a significant fall in cases of infections while the UK has reported a rise.

The two things Mrs Plumb is most proud of is how the charity has helped ensure national guidelines have been put in place about the monitoring of GBS infections and it has also significantly raised awareness of the infection among parents and the medical profession.

Mrs Plumb said: “A survey was carried out in 2006 which showed only 10 per cent of women taking part in a survey had even heard of GBS.

“Another was carried out last year and that had risen to just under 50 per cent.

“That is a huge, huge, change, especially given the NHS doesn’t routinely provide information.

“That is a big achievement but we will not stop until we’ve got that figure much, much higher.

“The most important thing is that helping with the guidelines and pushing for awareness, we have children who are walking around fit and health because of what the charity has done.

“We have healthy mums and healthy babies and you can’t ask for much more than that.”

Over the years, the creation of the charity helped Mr and Mrs Plumb channel their grief following the loss of Theo.

Mrs Plumb said: “It certainly helped at the start but it has become much bigger than that now.

“The charity has always been and still is a full time job and it is very satisfying to know we have made a difference and we have helped children and their mothers.

“My ultimate dream would be for a safe and effective vaccine to be developed. That is the holy grail.

“They told us in 1996 that a vaccine was 10 or 15 years away so we still have a way to go on that one at the moment.

“Last year we were told it was about 10 years away.

“In the meantime I would hope that within three to five years every pregnant woman will be informed about GBS and offered sensitive antibiotic treatment late in their pregnancy to avoid infections.

“That doesn’t seem unreasonable.”

Mrs Plum, her husband, 61, and their children Oliver, 23 and Camilla, 17, are walking 20 miles today (July 30) in Shropshire to mark the charity’s 20th birthday.

To support them, visit justgiving.com/fundraising/PlumbsWalkingForAdam.