What happens if you test positive for GBS? A personal story

Speaking with Northern Irish Mum Heidi Hughes about the arrival of her first child, having tested positive for GBS carriage.

01 July 2023 marks the start of Group B Strep awareness month. It’s “awareness” that for medical practitioners and mothers alike is the most important word when it comes to GBS carriage and testing; without awareness the opportunity to prevent some neonates suffering life-changing injuries as a result of of GBS is lost.

Heidi is my younger sister and we were all beyond thrilled at the announcement of her pregnancy in 2022 and my daughters eagerly awaited the arrival of a new cousin.

In early 2023 when Heidi was around 36 weeks pregnant we were texting and I asked her whether she had booked in her GBS test as yet? I was pretty surprised when her response was “what’s that?”. I had flippantly assumed her midwife would have given her a leaflet about private testing options or spoken to her about it.

I was interested to ask about her views on this:

When GBS testing was first mentioned to you, how did you feel about the fact you knew nothing about it?

I was really shocked and felt annoyed. I was anxious and nervous in this pregnancy as this was a very long-awaited baby and I had sadly suffered many previous miscarriages. I felt that I’d done a lot of reading and was well informed about everything important, so it was disappointing to say the least to feel I wasn’t given all the information from my midwife I would have wanted to receive.

What were the first steps you took in trying to find out more?

Like most people I went straight to Google. I also looked it up on my pregnancy Apps (Baby plus and Baby Centre Apps) that I used throughout my pregnancy and asked other members in the forum if they have been tested and how they went about it.

Baby Plus had articles on different things, including Group B Strep, but it made it sound like you would only be tested if the health professionals thought you needed it, not that it would be beneficial to have it done as a cautionary measure.

When I asked other group members on the Baby Centre App about it, some mums knew nothing about it, some said that they were tested very shortly before the birth, and others were not tested at all. Some of the mothers came back to say that they had been unknown carriers and had passed it onto their babies, but had never been offered a test and were really upset about it.

If it hadn’t been for my sister advising me to get a test done, I would have been none the wiser myself.

How was the process of ordering of a GBS test and the reporting of your results?

This was really straightforward. My sister sent me the link to the Group B Strep Support website, which was really helpful. The test pack arrived the next day and was easy to follow, plus the return prepaid envelope was included so was simple to send back. I got a text message with the results 2 or 3 days later. Once I had these I called the midwife and she said she would add it to my notes.

How did you feel when you found you’d tested positive for GBS carriage?

To be honest I felt really upset, frightened, and let down. I was really worried it meant something serious. If I hadn't done the test, would it have ever been picked up before the birth?

For something that has potentially devastating consequences a simple swab test prevented that risk from happening. But I also felt so much better knowing that we would be prepared for the birth and that the antibiotics would be there and ready.

What did your midwife say and do when you reported the test results to her?

She told me it was great that I had done the test and picked it up and was very reassuring. They covered my maternity notes in yellow stickers for GBS Carriage and told me that I would get antibiotics once in labour to prevent the GBS passing to the baby. She also said “why did you do it privately? We could have done it for you if you had asked". I didn't quite understand that: were there other tests I could request on the NHS? Why didn’t they offer it to me if the NHS would have funded the test? That was pretty confusing!

When you went to be induced how were you cared for?

The staff in the hospital were fantastic, we are so grateful to them. When I was taken to the delivery ward I immediately asked the midwife about the antibiotics and she already had them hanging up on the drip. It was so reassuring that they seemed to be well prepared to deal with me.

Most importantly: how is your baby girl?

Baby Adaline Rose is just amazing. She is truly thriving. After all the losses we suffered we feel so lucky that she is so happy and healthy.

Given the long-standing campaign work undertaken by the charity Group B Strep Support it is pretty disappointing that we still have pervasive problems with the dissemination of key and straight forward information on GBS and testing in pregnancy. The charity has many resources available on their website.

It is fantastic news that NHS England will now make training on GBS a mandatory requirement under Core Competency Framework (CCF). This framework establishes minimum training standards for all healthcare professionals involved in maternity and neonatal care. It is hoped this will also be rolled out to NHS services in the rest of the United Kingdom.

Jane Plumb, Chief Executive of GBS Support commented:

“I am delighted that the CCF now includes ‘group B Strep in labour’ as one of the essential topics to be covered in training….This will significantly improve staff awareness and education regarding group B Strep, ultimately eliminating the postcode lottery of information, care and support that families too often encounter.”

With information sharing and better awareness we can ensure that more babies like Adaline are safe and well following their delivery.