Our daughter and group B strep

Apologies that it’s been so quiet over here lately. I’ve been rather busy being a mum of two – we had a little girl at the end of November!

I wrote a draft of this post a few weeks after she was born but was too scared to post it. It’s very personal and there are areas of debate about it, but last week a friend encouraged me to share our experience and another friend admitted they hadn’t realised how serious the situation was. So clearly it needs to be made more public. Here goes…

Our daughter had group B streptococcus (group B strep). She could have died.

I had a quick labour and much better birth experience than with our son. 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 needed to be fed 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.

Since then we have been adjusting to life as a family of four. It’s incredibly stressful at times and incredibly incredible at others. 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. I struggle to talk about what happened. 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 year, our daughter will have regular check ups at the hospital to check for side effects from the infection. She has already had one check up which went well. Every milestone that she reaches – her first smile, her first giggle, kicking her legs, looking around the room when she hears a voice – 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 after our daughter being 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!

So there you go, that’s what happened and that is why I haven’t been blogging lately. I hope to blog occasionally about the random things I used to blog about!

What is group B strep? Well there’s not a lot of information out there. It’s “a normal bacterium which colonises between 20-30% of adults in the UK, without symptoms or side-effects” (from GBSS website). The reported facts differ but it doesn’t appear to affect many babies per year (300 on one website, 700 on another!). 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 or that it was life-threatening. There is a support group and there is a campaign 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 cost effective for the NHS to test all pregnant women. It is routine in some other countries to test pregnant women but this hasn’t reduced the incidences by much.

Given my baby girl was affected by group B strep, you might think I’d be out there lobbying for all pregnant women to be screened. However, I can see where the NHS is coming from. I know that might sound awful because I know that babies get very sick if they get group B strep and some die. Really, I know! It pains me to say it because if I had been tested, my daughter would never have got poorly. But I don’t know the way around it. Private testing is available but there doesn’t seem to have been enough research on group B strep, or not enough available. And it’s definitely not a well-known illness.

I absolutely endorse the support groups for trying to get more information and research. And I’m definitely not against testing!

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3 thoughts on “Our daughter and group B strep”

  1. Thanks Jenny for writing this. I have to say, I’m like the friend you described in not knowing the seriousness of this. Crumbs, you guys have been through it. Thanks for sharing.

  2. We’re so sorry to hear of your daughter’s group B Strep infection, and moved by your eloquent description of what you experienced.

    May we suggest you look at the information in our Report at http://www.gbss.org.uk/2013Report which describes the pros and cons of the UK’s current risk-based prevention strategy and of screening strategies? The latter is international best practice for developed countries, and has resulted in falls in the rates of GBS infection in newborn babies of up to 80%. The UK’s rate has sadly risen (not fallen) since the risk-based strategy was introduced in 2003. There’s a graph at http://gbss.org.uk/who-we-are/about-gbs/gbs-incidence/ which shows the reported rates of GBS infections for each year since 2003 – which are higher now than they were then.

    GBS carriage can come and go, though research has shown that the carriage status of a women, as determined by a sensitive test, is highly predictive for the next 5 weeks (which is why the window for testing in most developed countries is 35-37 weeks of pregnancy – late enough to be highly predictive for when Mum is most likely to go into labour, and early enough to stand the best chance of getting the result before the baby is born).

    Thank you so much for sharing in this blog about what happened to you – it will raise much needed awareness. We at GBSS want every pregnant woman to be informed about group B Strep and offered a sensitive test late in pregnancy, with antibiotics offered in labour to those carrying the bacterium. This is in the view of our medical advisory panel the best prevention currently available and will prevent most GBS infection in newborn babies and the resultant deaths, disability and heartache.

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