It’s hard to explain the feeling of being told that your baby is ill and not just your average cold but life-threatening; the closest I can describe it is numb. Everything stands still, and for a brief moment, it feels like your life is at a standstill. It’s not real. You are having a bad dream, and any minute your alarm will sound, and normality will resume. Have you ever heard of Strep B? This us our story.
Seconds later, the Doctor is still staring at me as I cradled my baby. ‘Your baby has Meningitis,’ she explained. I remember looking directly at the three trainee Doctors. They couldn’t return my glance. ‘Have you heard of Strep B? Were you tested during pregnancy?’ My mind was fog, pure fog. I think it’s remained foggy since. I just heard those words every parent dreads ‘Meningitis‘. Four-day old baby’s don’t have a chance against meningitis. I held him a little tighter.
While my three-week stay in hospital was only the beginning, I struggled to identify with the Mother I was expected to become. I handed my baby boy over to the care of the intensive care team, no holding, no feeding, no caring. Within hours my motherly duties were replaced by an intensive care nurse. Machines were now monitoring the baby I had carried lovingly for nine months
Doctors entered, checked his charts and often had hushed conversations in the corner. I kept waiting for the news that he wasn’t responding that he just wasn’t strong enough. Thankfully at six days old they lowered his sedation, he improved and by seven days old he was removed fully off the ventilator. By the evening we were in the ward. It was a little bit of a whirlwind to go from intensive care to have my baby boy handed back to me.
Miles from Home
Our local hospital is one of the best of its kind but sadly doesn’t have a children’s intensive care unit. We spent two weeks in Southampton General, who frankly were amazing. I felt very looked after, apart from one night which we won’t mention where I spent the night crying while Thomas screamed! Ok, so I mentioned a little. It was my birthday, added trauma!
We had our own room, with my little TV, I was provided with three meals a day and the nurses were attentive and amazing. Now, the reason we couldn’t return to our local hospital was because
- They had no transport
- Thomas’ veins were too week to put a central line in so he had cannulas. Which needed regularly changing.
- They had no beds
Strangely, however, when they needed Southampton to take one of their patients, we had transport, a bed, and the cannulas weren’t an issue for the seven short days. By this point, I wanted to go home, and it felt just that little bit closer. My time there was the opposite. I was alone, isolated. No one checked on us apart from medication times, and due to a mix up with Thomas’ records, he wasn’t allowed to leave the room due to being isolated. On day six, a Doctor realised and told me to take him for a walk for some fresh air. It was too late.
I’m honestly surprised I didn’t end up with postnatal depression! Now, Strep B was a whole new concept. I googled the moment I got home and I was shocked to find that tests existed. So what is Strep B and can it be prevented?
What is Strep B
There are many websites on the internet, talking about Group B Strep. The NHS website has a page but they play it down.
Here is a summary:
Group B strep is a type of bacteria called streptococcal bacteria. It is a very common bacteria that lives in the human body. It is normally harmless and often you won’t even know you have it but it affects every 2 in 5 people.
Group B strep is common in pregnant women and rarely causes any problems.
It’s not routinely tested for, but maybe found during tests carried out for another reason, such as a urine test or vaginal swab. Unlucky for me, my urine test never showed signs and I was never tested.
Under the care of a midwife and consultant team due to my excess water, Thomas was born quickly. He was born a healthy 9lb baby, however, very quickly after leaving the care of the hospital. Things changed faster than you can imagine. Poor feeding, fussiness, not opening his eyes. My mother’s instinct kicked in. 6.25 am on the 21st September 2010, after an awful night, he was admitted to hospital for observation. From the time he was admitted to the time he had his first round of antibiotics at 10 am to the moment he was plugged onto life support, I can’t tell you how rapidly he went downhill, a matter of hours.
It could have been prevented, one little test, and it could have changed everything! If you’ve ever been affected by Strep B or you know someone who has. I am very much an advocate for educating and share a lot of news from The Group Strep B Support website. There is a whole host of information, and Jane Plumb MBE, is the founder alongside her husband, Robert. Please have a read. Their campaign to improve awareness is fantastic.
In September, it will be the 10 year anniversary and Thomas’ 10th birthday! A day that will be a day of celebration but also marked with a little bit of sadness that his life changed so dramatically.
I did a lot of self-blame when I was told I was the carrier. As a Mum, you burden yourself with guilt. ‘Could I have done something differently? Maybe I should have gone to the hospital sooner, were their signs I was a carrier?’ Even now, the years have passed, I still wonder if I really could have made a difference. Since that time, we’ve plodded on as a family of four with life-altering upheavals, optimism about Thomas’ future. Sadly, we knew very early on that there was significant brain damage.
The Poster I Never Saw Coming
As I was saying, we were adjusting to life with a baby that currently had a large question mark over his head. He was developing slowly, not too slowly but behind his peers. I was due to attend a follow up due to my third-degree tear but had to cancel it twice due to sickness so when I finally went Thomas was three months old. There I was sat in the waiting room, I looked up and there above me was a Group B Strep awareness poster! It made my heartache.
I guess what shocked me was that I had no awareness of Group Strep B or anything related. There had been no leaflet in my maternity pack, no posters on the wall. It never hit my radar until the Doctor uttered the words I will always remember. ‘Your son has meningitis…have you ever heard of the Strep B infection?’ That sentence changed our lives. I was shaken more than I ever expected to be. Could seeing that poster have made a difference? I guess I will never know. But Strep B woke up many of my friends who went on to request tests for their pregnancies. Mostly negative, but a couple were positive given antibiotics in labour. So if something came out of it, I educated others.
Thomas and the Future
We are one of the lucky ones. Some parents had to say goodbye; others have children with far more complex needs than Thomas. I will always be forever grateful that he is still with us. Thomas has a multitude of problems ranging from epilepsy, cerebral palsy, learning difficulties, speech and language delay and social disorders. Still, he’s Thomas and a daily challenge, but he’s our miracle.
Thomas’ future is likely to be an adult dependant one. A lot we learn along the way. We have this saying in our house ‘when he’s older’ like somehow Thomas will suddenly cope differently as a 15-year-old. Having said that, his understanding has come along way in 18 months. We can but try.
I do think we are ready to attempt more things as a family. It’s hard but we just have to use the experiences as learning curves. I do occasionally post images on my social media, but I try and respect Thomas’ boundaries and needs. If you’ve been affected by anything you’ve read, perhaps you’ve tested positive previously or you just have questions, please comment below.
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