My daughter Madelene would have turned 12 this September, and it would have been her bat chayil.
Instead she passed away quite suddenly on October 23, nearly two years ago. Maddie was born with Strep B meningitis and she contracted septicaemia once my waters broke, approximately 24 hours before her birth.
Group B Strep (GBS) is the most common cause of severe infection in newborn babies and the most common cause of bacterial meningitis in babies younger than three months. Around one in every 1,750 newborn babies in the UK and Ireland is diagnosed with early onset GBS infection. The infections that it most commonly causes in newborn babies are sepsis, pneumonia and meningitis.
Although GBS infection can make your baby very unwell, with prompt treatment most babies will fully recover. However, of the babies who develop early-onset GBS infection, one in 19 will die and, of the survivors, one in 14 will have a long- term disability , sustaining permanent mental and/or physical problems. Our Maddie was diagnosed after six weeks with severe brain damage and cerebral palsy
Like any new parents-to-be we’d been excited and euphoric. We had our perfect dreams of what life would be like, but the moment Maddie was born our life was torn to pieces.
We were left traumatised and exhausted as she wouldn’t stop screaming, and we had to live with the brutal reality that she was in pain from her terrible brain injury. After five months the doctors finally put her on diazepam to calm her and help her muscle spasms. This was her and our only relief. As she got older her medicines increased, becoming quite a cocktail.
The first few years of Maddie’s life were incredibly hard and often unbearable. It felt a bit like being taken to a country where you don’t speak the language, have no baggage and no currency and you’re screaming inside “What now? Help!”
We went through the stages of anger, bargaining — what we could or should have done differently — blame and depression, coming to the realisation that Maddie would never be able to do the things you take for granted in other children, such as walking , talking, sitting without support, scratching an itch or feeding herself . We took one step at a time and with each step there was a glimmer of light before it went dark again, but it got easier and the light seeped through more and more, year after year . Finally, to go back to the strange country analogy, you learn the language, you do the work to earn the money to buy new clothes and finally reach acceptance.
Maddie blossomed and, in her own way, was a very happy girl, with the biggest smile and an irresistible laugh.
Following her birth, friends of ours who became pregnant requested and insisted on a GBS test. A few found they were carriers and needed antibiotics during labour which prevented any issues.
The NHS does not routinely offer all pregnant women screening for GBS. Since September 2017, the Royal College of Obstetricians and Gynaecologists has recommended that selected women should be offered the ECM test specifically for GBS. Many maternity units still use a much less sensitive test that will miss up to half of carriers, so if you are pregnant please do explore with your health professional what is available, or buy a home ECM testing pack, from as little as £35.
In Maddie’s memory and to celebrate what would have been her bat chayil we are holding a barbeque in aid of a Group B Strepcharity. We are very grateful to Ashley Kelman of Kelmans in Bushey for donating and sponsoring the event
We also have a ‘justgiving’ page for Group B Strep Support should you wish to donate and support our efforts to to raise awareness and to help new born babies.
This article is not meant to to scare but to educate. I went on to have two other beautiful, healthy girls.
