Fighting to raise awareness of Group Strep B - our story

Sinead with her daughter Ellen
Sinead with her daughter Ellen

Sinead McClafferty is a Derry woman who has personal experience of giving birth to a child with the Group B strep infection.

In 2006 her baby Finn was born with the condition - thankfully he made a full recovery but since then Sinead and a group of campaigners have fought to raise awareness of Group B Strep locally. In this article written for the Derry Journal she explains how far they have come and their expectations in the lead up to a meeting with the Chief Medical office on Thursday.

March 2011 I was pregnant with my fourth child.

I had greeted the news of my pregnancy with a little shock and a touch of fear – would we cope with four children, physically and mentally!

One thing I was sure of though is that my baby would have a safe arrival into this world.

You see in October 2006, my first little boy, Finn was born with Group B Strep – thankfully though he made a full recovery.

Group B Strep was to touch our family again when in June 2009, my sister in law (and very good friend) Cathy McClafferty lost her niece Grace McGroarty to late onset Group B Strep infection.

Since then a walk has been organised annually by her aunties – Cathy and Charlene, in the little angel’s memory and to raise awareness of Group B Strep to women locally.

It was as we were preparing for last year’s walk that I was contacted by Jane Plumb from Group B Strep Support to say that Radio Ulster’s Talkback programme would be talking to a lady who had the immense courage to speak about the loss of her baby just a mere nine weeks previous.

March 2011, Jillian and Andy Boyd from Belfast were expecting their first child, a little girl called Erin, and were on the home straight to welcoming her into this world.

Sadly on the 27th March, this dream was horrifically shattered when after enduring most of her labour at home Jillian arrived at the Royal Hospital and after a routine examination was simply told that her baby had died.

Jillian bravely retold her nightmarish experience of a life which was full of expectation, hope and happiness at the imminent arrival of Erin only to be crushed when sadly their little angel was born sleeping as a result of the preventable Group B Strep infection.

Serendipity was a word that was used a lot last summer and not long afterwards Cathy and I made contact with the Boyds.

Jillian and Andy had already done so much in contacting the Health Minister Edwin Poots and numerous politicians to lobby support to have the issue of Group B Strep brought forward for discussion.

We all met one day in the City Hotel where we were meeting Mark H Durkan MLA in his role as a member of the Northern Ireland’s Executive’s Health Committee.

This was to be the start of the B Aware Campaign which sadly also uncovered the story of Sarah and Mark Cowan who, exactly one month after Erin, lost their little boy Harry hours after his birth after he too succumbed to Group B Strep infection.

Two families torn apart only one month apart.

The B Aware message was clear – Group B Strep: B Aware ~ B Tested ~ Anti~B~otics. Guidelines were one thing, however real life is another and the B Aware group felt that mothers to be were being denied the opportunity to make informed decisions for themselves about how their pregnancy should progress.

Throughout the summer of 2011 the Group succeeded in raising substantial media interest about the issue of Group B Strep, thus potentially saving other parents of similar pain and heartache.

A number of well-known faces such as RTE’s Miriam O’Callaghan and comedian Tommy Tiernan also lent their support to the campaign.

Our local politicians were also exceptionally supportive with cross party support being led by the Deputy First Minister and we felt encouraged that our voices were indeed being heard.

We were contacted by over 40 families affected by GBS which demonstrated the strength of our campaign.

The same issue was to appear time and time again – never heard of GBS, never told about GBS and when asked about GBS some medical professionals were even dismissive of the concerns.

Word filtered through to us that the Health Committee were to hold an evidence session about Group B Strep in mid-September.

However, the incredible happened when Jillian was contacted by the office of the Health Minister, Edwin Poots, requesting a meeting with herself and Andy. This eventually was extended to 12 people.

So on the 6th of September, 2011 the parents and family members of Erin Boyd, Harry Cowan, Finn McClafferty, Grace McGroarty, Katie Rose Duffy, Heather Crutchley and Samuel Savage sat face-to-face with Minister Poots and his advisors and pleaded with him for change.

It was an exceptionally emotional meeting and Minister Poots was visibly moved as he heard our stories.

He sympathised with everyone concerned and agreed that there was very little in the way of statistics available to gauge a better understanding as to why Northern Ireland has the highest rate of Group B Strep in the UK and Ireland.

He committed to an audit to determine the level of incidences and added that it was possible for Northern Ireland to make a decision to bring in routine testing independent of the UK, but that he would need evidence and research to back up that decision.

He also agreed to improving communication about Group B Strep during pregnancy and to signposting women to sources of advice, including the Group B Strep Support charity, who provide information on the availability of private tests.

The following week, 14th September, as I lay in hospital having given birth to Ellen MaryKate McClafferty, my thoughts were somewhat distracted by knowing the B Aware ‘team’ together with representatives from the Group B Strep Support charity were presenting their ‘evidence’ to the NI Health Committee.

The Chair Michelle Gildernew and members of the committee stated that she had heard nothing from the Department of Health’s spokespeople which would make her believe that routine swabbing should not be introduced.

It is now March 2012.

The Health Committee have held another evidence session dedicated to GBS.

This has resulted in Northern Ireland leading the way by setting up a regional steering group, the first in the UK, to oversee and guide the on-going work on preventing Group B Strep infection in newborn babies here.

We take another trip to Stormont this Thursday to meet with the Chief Medical Officer to provide our valued contribution to the discussions.

Sadly though the meeting will take place two days after the first anniversary of Erin’s death.

Too little too late for Erin, Harry and Grace but their legacy will live on in what their parents have achieved in their efforts to try and save others from the tragedies they experience.

Grace’s mum and dad, Shauna and Stephen McGroarty had another little girl, Ava Rose, late last year.

They now live in Australia, a country which routinely tests for Group B Strep.

They had this to say ahead of next week’s meeting.

“It has been such a bitter sweet couple of months for us.

“Ava is doing so well and is bringing such joy to our lives however you never for a moment forget that she will never know her big sister Grace.

“Jillian and Andy, and the rest of the ‘B’ Aware campaigners have done such tremendous work and we hope that their continued dedication to raising more awareness of GBS will give other parents the opportunity to make informed decisions for themselves as to how their pregnancies progress.”

For more information on Group B Strep click on www.gbss.org.uk.