'We could have lost him'

Clelia Mountford came frighteningly close to losing her first baby to a disease that most people have never even heard of. She reports on what every parent should know about group B streptococcus

The first two weeks of my baby's life were the best and worst time of my life. Twenty-four hours after giving birth to a healthy boy, I found myself standing over his cot in the Special Care Unit of West Middlesex Hospital watching my child fight for his life.

Tim and I had been married for five years and had decided to launch the 21st century in style with the birth of our first child. I'd had an easy nine months. With no morning sickness and no excessive fatigue, I was able to enjoy my pregnancy and continue with my job in radio up until my eighth month.

After a relatively smooth labour, I gave birth to Benjamin Jack on a Saturday afternoon. He was perfect. At first the obstetrician was concerned by Ben's "grunting" and the presence of some meconium (stools normally passed by a baby during the first few days of life, or before if there is fetal distress) but after routine checks he seemed satisfied.

I was discharged from hospital on Sunday night. Things were going well. Ben was feeding greedily from the breast and was very alert, fascinated by his new surroundings. However, during Monday, I had increasing difficulty in getting Ben to take any milk. This was the total opposite of his behaviour the previous day. He wasn't interested in feeding and seemed drowsy and lethargic. Having already seen the midwife earlier that day, I was reluctant to telephone her for advice, not wanting to seem over-anxious. But Ben had now gone without milk for six hours and the situation was becoming serious. The midwife advised us to bring Ben back to the hospital to the special-care unit, as a "returned" baby.

By the time we arrived Ben was floppy and turning blue. The staff immediately put him on a drip and took blood samples. Over the next few days, tiny Ben became like a pincushion, subjected to numerous needles.I could not bear hearing his screams as the staff took three lumbar punctures, yet more blood samples, and relocated the IV in his tiny hands and feet. Tim and I were devastated. We could not believe the sudden turn of events.

In the middle of that first terrible night in special care, the senior consultant advised me that she suspected meningitis. However, many more tests were needed to confirm the diagnosis. The consultant congratulated us on bringing Ben in as soon as we noticed the change in him. As a result, they had been able to put him on a course of antibiotics immediately. A few more hours and it may have been too late.

Two days later, the registrar informed us that a culture had been grown from Ben's blood sample which confirmed that he had developed group B streptococcus, a potentially fatal disease. However, the antibiotics had prevented the infection spreading further into his bloodstream and, after a two-week course, it was likely that Ben would recover.

Ben and I stayed in special care for two long weeks. As each day passed he became stronger and started to feed more enthusiastically. After five days I was able to have him in a cot beside my bed in the ward. I was ecstatic the day he started to cry for food. At last he was beginning to act like any normal newborn.

After final checks, including one to test his hearing (hearing can be impaired by the type of antibiotics he was on), he was pronounced fighting fit and, once again, we were discharged from hospital.

I had never heard of group B strep. No one had mentioned it in my ante-natal classes. None of my pregnancy and birth books referred to it. And yet, as I began to discover, an alarmingly large number of babies suffer from GBS – with many fatalities.

So what is group B streptococcus? The bacteria is normally found in the vagina and/or lower intestine of 15 to 40 per cent of all healthy, adult women. Since the early 1970s, it has been identified as the main cause of life-threatening infections in newborn babies. Most GBS infections are caught during childbirth when the baby comes into direct contact with the bacteria carried by the mother.

There are two types of GBS disease in newborns: early- and late-onset. About 80 per cent of GBS disease is early-onset, occurring in the first two days of life and usually apparent at birth. Symptoms include the rapid development of breathing problems associated with blood poisoning. Late-onset disease – which usually presents as GBS meningitis – occurs after the baby is two days old and, normally, by the age of one month but, rarely, up to the age of three months.

Approximately 15 per cent of babies die from early-onset disease and 5 per cent die from late-onset disease. Overall, GBS infections affect at least one in every 1,000 babies in the UK and are on the increase. Each year, out of about 700,000 babies born annually in the UK, 250,000 babies are born to mothers who carry GBS and approximately 100 infected babies will die of the disease.

And what about those babies who survive GBS? Are there any long-term effects? Up to a third of survivors of GBS meningitis suffer long-term mental and physical handicaps, from mild learning disabilities to severe mental retardation, loss of sight, loss of hearing and lung damage. However, the great majority of survivors of early-onset disease experience no long-term damage. Thankfully, Ben is developing normally and is now a healthy 18-month-old.

On learning that I had carried GBS, I was keen to find out how and why Ben had contracted the disease. There are recognised situations that increase the likelihood that a baby will be exposed to GBS and, if susceptible, of developing infection. These are where labour is premature (before 37 weeks), premature or prolonged rupture of membranes and where the mother has a raised temperature during labour. As I did not seem to fit any of these categories, the reason why Ben was more susceptible to the disease remains a mystery. One thing is certain: having already had a baby infected with GBS multiplies the risk for my next child about 10 times.

So what can be done to prevent it happening? Or in my case, to avoid it in any future pregnancies? There is currently much debate among British medical professionals over whether to follow the US's lead and offer costly screenings to all pregnant women to check for GBS. Certainly, women such as myself who have had previous GBS births should be screened in the last few weeks of pregnancy for the disease. It is suggested that treatment of infected women would then take the form of antibiotics immediately at the onset of labour or the rupture of membranes.

In all the reading and research I have carried out since Ben's illness, I have been amazed to learn that many healthcare professionals are still uncertain as to how to treat the disease and often fail to recognise it. I was fortunate in that the staff at West Middlesex Hospital were very experienced in treating group B strep and were able to act fast in recognising the symptoms and offering the most appropriate treatment.

The day I brought my son home for the second time was not as joyful as the first homecoming. I had encountered a disease of which I was totally ignorant and, like so many other mothers with GBS babies, was totally unprepared to deal with. GBS infections are more common than other illnesses for which pregnant women are screened, such as rubella, Down syndrome and spina bifida. Yet GBS remains generally unknown to the public. More information needs to be made available to pregnant women. After all, 100 deaths of newborns each year from GBS is 100 too many.

Group B Strep Support, PO Box 203, Haywards Heath, West Sussex RH16 1GF, 01444 416176, www.gbss.org.uk