Group B Strep awareness: our story again

July is group B strep awareness month so I thought I would re-share our experience of group B strep below, with a few edits:AntibioticsOur daughter had group B streptococcus (group B strep). She could have died.

Back in November 2015, I gave birth to a ‘healthy’ baby girl. All seemed well to start with. I had the ‘normal’ after-delivery experience which I didn’t have with our son, where the midwife offered me a cup of tea! Amazing!

Unfortunately after several hours things were no longer so amazing. An hour or so after hubby had left to get some food and sleep, our daughter started grunting and turned purple and cold. The midwife checked her over and spoke to a paediatrician who took her to the Special Care Baby Unit for oxygen, a chest x-ray, tests and observation. She was also put on antibiotics in case she had an infection. Later that morning I went to see her. She was in an incubator but no longer on oxygen and after a few hours was allowed back on the post natal ward with me. She’d need to complete 48 hours of antibiotics.

The following day she had been less interested in feeding and appeared more poorly. That evening we were given the news that she did indeed have an infection and she would be moved back to special care to complete a 7-day course of antibiotics. She would also need a lumbar puncture to allow them to test further. She was back in an incubator and would be fed my expressed breast milk by tube. I took the news very hard and unfortunately hubby had just left to take our son home for dinner.

I was well cared for and encouraged to get discharged from the post natal ward the following day so I could move onto special care to be with our daughter. Once this went through, hubby and I carried my bags down to special care where we were given further test results. Our daughter had septicaemia caused by group B strep (more info below). She would need to complete 14 days of antibiotics. We wouldn’t be going home for at least another week and a half.

It was devastating news. The lumbar puncture was to find out if she had developed meningitis and if the infection had got to her brain. I asked not to be told what the outcome might be. Hubby went home and looked online to find out more about group B strep. As did the rest of our families. I knew it was serious but I didn’t know how serious. I knew she was very poorly and I think I knew on some level that she could die but I hadn’t acknowledged it. That would have been too much.

One thing I really struggled with was that the infection was passed to our daughter from me. I spun myself in circles feeling guilty for making her poorly.

On top of the news that our daughter was so poorly and there could be several side effects, I was separated from hubby and our son. They came in every day to visit – hubby sometimes on his own so we could talk about things, pray, cry and cuddle. Friends and family visited too. But it was very lonely at night. And I was living off sandwiches, soup and ready meals.

After a few days our daughter was declared well enough to room in with me. She had been feeding well without the tube and her vitals were stable so she moved in. I had to take her back to the nursery for antibiotics and observations, and we were given a ‘day room’ to hang out in so we weren’t stuck in my room during the day, but it meant she woke me up in the night to be fed rather than a nurse knocking on the door. It was good practice for coming home.

Praise God, the lumbar puncture results came back clear and her infection levels came down! We came home once she had completed her two-week course of antibiotics.

Sometimes we just carry on as if nothing ever happened but I have been known to look at our daughter and cry tears of joy because she is alive. It was only when I got home that I discovered how serious group B strep is and found out weeks later that hubby was taking videos of her in her incubator not just because she is our daughter, but because she could have died.

During her first two years, our daughter will have regular check ups at the hospital to check for side effects from the infection. So far her check ups have revealed that she is developing normally. Every milestone that she reaches – smiling, rolling over, giggling at her brother – we thank God for. Not that we didn’t with our son, but we are actively looking out for things that might not be considered ‘normal’. Not knowing what the future holds for her means we have to trust God even more.

I cannot adequately describe the range of emotions we went through. Elation that our daughter was born safely, with no complications this time and excellent midwifery care. Confusion after she was taken away to be checked over in special care. Concern as she remained in special care. Shock at her test results. Relief as she was discharged and we came home to our new normality. God gave me all that I needed during that time and I learned what it means to really cry out to him in prayer. I also felt so looked after by friends and family, and knowing people were providing food for the boys at home was such a relief!

What is group B strep? Well there’s not a lot of information out there. The group B strep support website provides some of the following information. It’s “a normal bacterium which colonises between 20-30% of adults in the UK, without symptoms or side-effects”. There is a one in 300 risk that a baby will develop group B strep if its mother is carrying it. Group B strep is the most common cause of infection in newborn babies, however many babies are born to women carrying group B strep but do not catch the infection for some reason.

I had heard of group B strep through online pregnancy websites but I had only read the words, not what it meant. I had no idea that so many women carry it, that it was life-threatening or that you could be tested for it. To have the test done privately it costs £35, however the test would cost the NHS £11 and could provide it at no cost to pregnant women. One of my friends actually got tested after we announced on facebook that our daughter had been born and had group B strep. As well as the support website, there is a petition to get all pregnant women tested as if you are a carrier, you can have intravenous antibiotics during labour to try to prevent it being passed to your baby. If we decide to have any more children, I will have antibiotics during labour because our daughter had the infection.

It’s very confusing because group B strep seems to come and go. You could have it today but it could have gone in four weeks when you’re due to give birth. And vice versa. That, and the number of babies affected by it, means it is not necessarily cost effective for the NHS to test all pregnant women. Plus all of the antibiotics potentially unnecessarily being pumped into pregnant women in case they pass group B strep on… There is a helpful section on the NCT website about this here.

Well after months of pondering, I have signed the petition for women to be tested. Even now, 7 months later, I still think about what happened. I am so grateful that our daughter seems to have come through it unscathed but I know other women will lose their children to group B strep. If we can stop that from happening, let’s try.

Original post published 16 March 2016