My waters broke very unremarkably with a dribble at 8pm on 12th March 2003, 5 days before my due date. We made our way calmly to hospital in spite of a flat tyre en route, where baby’s heart was monitored on a trace. After an hour, and with only mild cramps, I was on the point of being discharged when I pointed out the pale green discharge on the pad in my pants. “Oh that’s meconium” said the midwife. I’m afraid you’re staying now”.
With me linked up to a trace, my partner and I spent the next rather unremarkable 24 hours playing cards and waiting for baby to make an appearance. I was induced around 12 hours after we arrived as my labour failed to progress. Another 12 hours later and after a bit of attempted pushing with an epidural it was decided to try forceps, ventouse, and our daughter was eventually born by emergency caesarean 24 hours after my waters broke.
She was very grizzly from the moment she was born but I just thought this was normal for a baby, and didn’t seem surprised when the midwives offered to take her off in the middle of the night to let me have at least a few hours sleep, and to try to calm her. I was somewhat relieved to hear that even they had difficulty in settling her during the night due to her sore head following both the forceps and the ventouse, and had given her a dose of calpol.
At 16 hours old, on her 2nd or 3rd check up a junior paediatrician noticed that her temperature was beginning to rise, and commented that the grizzliness could be a sign of infection. All I could think of was flu as they took her off for a course of antibiotics. My partner and I were taken to SBCU to see her where all the monitors and stuff were gently explained - it all sounded so routine and nothing to worry about. It was only on our return to the maternity ward that we found I had been given a private room, and the paediatric registrar and senior midwife sought us out to explain that our baby daughter had probable meningitis which could affect her hearing, and handed me a Group B Strep Support leaflet. This was the first we’d ever heard of GBS. Frustratingly the gist of the leaflet seemed mainly how to prevent infection, which seemed a bit late.
From here things began to deteriorate. I went to visit her on my own and was casually told that the rapid eye movements were not her dreaming, but fitting. I then tried to return with my partner during his visiting time but her cot was gone. When we asked we were told she had been moved from the lowest level of intensive care to the highest. Her little body was a mass of wires, with a bonnet hiding more monitors stuck to her head and a tube taped into place over her mouth. The next day the consultants all came down to my room, where another bed had been wheeled in for my partner, and told us that they had been quite optimistic, but she had suffered a couple of severe fits overnight, her kidneys had started to shut down, that she had a 70% chance of survival, and that many people liked to christen their baby at this time. But we were not religious and she had no name. We decided to go to our home for the day for a change of scene, and to ring family and email friends to prepare them for the worst, and name our daughter Isabel.
Then almost overnight things started to stabilise. Her kidneys began to start working normally and she had no more major fits. She was discharged 3 weeks after birth but with a diagnosis of permanent brain damage, and was likely to have problems with vision, movement, and possibly intellectual problems.
We thought long and hard about the difficulties, and risks, of having another child - could we care for Isabel and a baby, would the baby ‘suffer’ at the expense of Isabel, was it fair to a sibling to have a sister like Isabel - and we decided to have another child in 2005.
Before we started trying we visited the GPs who requested an appointment with the obstetrician to talk through how the likelihood of carrying GBS in subsequent pregnancies would be managed. And whilst very reassuring, it was quite upsetting to repeatedly be told by GPs, midwives and consultant obstetricians, how ‘unlucky’ we’d been with Isabel, and that GBS was ‘nothing to worry about’, often with her sitting right next to us in the consulting room.
My second pregnancy was again pretty plain sailing despite being 39. As I had had an emergency caesarian with Isabel I was offered a planned caesarian, and I was assigned a ‘high-risk’ midwife who usually dealt with teenage pregnancies who admitted that I knew more about GBS than she did. I discovered I was tested for GBS at around 30 weeks after an internal examination when I feared I was leaking fluid (turned out to be stress incontinence with a bad cough). I spotted the GBS result on my GPs notes. No-one had thought to tell me. I wonder if they would have done so if it was negative. He prescribed oral antibiotics, and was not aware that they are not effective with GBS bacteria, even though I tested positive 10 days after a course of exactly the same antibiotics for a persistent cough. I kept the antibiotics for peace of mind should my waters break unexpectedly as they did with Isabel.
As feared my waters broke two weeks early at 4am and we rushed to hospital where we had to repeatedly insist and remind the midwives to arrange for IV antibiotics the consultant obstetrician had reluctantly signed me up for. These were administered 3 hours after my arrival in the Labour Ward. Baby Zoe was born another 2 1/2 hours later by emergency caesarean, and was checked over by Isabel’s paediatrician who we bumped into on our arrival at the hospital that day, and arranged for Baby Zoe to have 5 days of IV antibiotics just as another precaution.
Isabel and Zoe were joined by a baby brother in 2008. In part because of my age, now 42, and in part because of my voicing worries about GBS, I was offered a barrage of monthly check-ups and told not to worry about the GBS. I discovered in my notes that I tested positive for GBS during pregnancy 2 days after I gave birth to Leo by planned caesarean.
The first 12 months of Isabel’s life very difficult, watching an unresponsive baby wondering what on earth she would ever be capable of. On her 1st birthday she was registered blind and diagnosed with spastic quadriplegia - severe cerebral palsy affecting all four limbs. From 8 weeks of age she, and I, had a full diary of physiotherapy, hydrotherapy, portage, occupational therapy, dietician’s, hearing assessments, opthalmic appointments, visual stimulation, consultants’ check-ups, and special needs playgroups, often visiting hospital three times a week for one appointment or another.
Born a healthy 8lbs 4oz her feeding, and consequently growth, deteriorated to the point that she was two 2 weeks away from having a feeding tube permanently fitted directly into her stomach at around 3 years old. And at 5 years old she was diagnosed with Type 1 insulin dependant diabetes which was hinted to be related to her having had a severe bacterial infection. She was also diagnosed as having premature puberty at 8, meaning her periods will start around 10 years of age, and she will be at risk of osteoporosis earlier in life because of this. She is due major hip surgery in a few weeks.
Isabel was 10 years old this March. She is of course still severely physically disabled and has moderate to severe learning disabilities. The combination of blindness and cerebral palsy mean she has the movement of a 6 month old baby. She cannot walk, crawl, sit up, roll, or use her hands well enough to play with toys. She has to be dressed and undressed, spoon fed, and have every personal and intimate need attended to by a carer and is doubly incontinent. People see her slumped in her highly supportive wheelchair which she has to be strapped into to stop her falling out and think she is a vegetable.
But I get the impression from the consultant’s and therapists reactions that we were lucky and no-one expected her to do as well as cognitively as she has done. At eighteen months she started to touch her nose when asked, which was the first sign of ‘intelligence’, and quickly began to learn other body parts within her limited reach, then animal noises, then ‘car’ from the sound of our gravel drive, the car door opening, and the car seat being done up, then ‘hat’ when anything was pulled over her head. Around 2 years of age she discovered comedy, learning that mispronounced animal noises are funnier than the real ones. And when she started school at four she could count to 100 by rote in English, 50 in French, 20 in Italian, and 13 in Swedish (which was as high as Daddy can count). She jokes, pays attention when I least expect, and demonstrates a pretty good range of 10 year old behaviours. I know this doesn’t make her a genius but she is a bright funny beautiful contrary nearly teenage girl who can delight interested strangers if they take the trouble to engage with her, and thankfully doesn’t know life should have been very different
The After Effects on Me
I remain heartbroken at what happened to Isabel. So much so it took me a long time to be able to look at photos of myself pregnant knowing she was okay then. I just want to pick her out of photos of her in the delivery suite and get someone to pump her full of antibiotics a full 16 hours earlier than she got them. Around 1 year old her consultant suggested I had ‘grief issues’, which after getting over the initial shock of thinking she was trying to tell me Isabel was going to die, I realised that you can grieve for the loss of someone’s ability, and that milestones and birthdays and sometimes day-to-day things can be painful reminders of the healthy child we should have had. I am fiercely proud of Isabel but get frustrated both with her not showing people her full potential, as well as other people not seeing past her wheelchair. Everybody should have an Isabel in their lives then the world would be a far less selfish and more inclusive place.
I have suffered from brief spells of depression, I think sometimes because I am fed up of all the worry and hard work. NICE and the NHS took a gamble in not testing for GBS and we lost. Day to day life is fine but we are dogged by worries about education, care costs & equipment, surgery, her & our life when she reaches 18, and care for her after we’ve gone. Even arranging an accessible holiday is stressful.
I am angry that that GBS testing is not routine. At the time, the only GBS test available was 50% only reliable, giving a false negative half the time it should have given a positive result. But even 50% accuracy would have given Isabel 50% chance of less or no disability. But even now there are much more accurate GBS tests available GPs, midwives, and obstetricians still maintain that GBS testing is “not important”, because NICE have concluded that routine testing is ‘not cost efficient’ because only 1 in 200 GBS carriers will have a baby affected.
For more information about Group B Strep please visit www.gbss.org.uk