I’d like to introduce you to my son, Adam Edward Cheshire, who was born on 25th March 2011.
He was full-term; my pregnancy was normal and, despite suffering complications myself; his delivery was also normal. Adam is now sixteen months old and absolutely beautiful, despite having a will of his own and a temper to match! But these details, while absolutely accurate, do not even begin to tell the full story of my son’s birth.
Adam at 16months
Sixteen hours after Adam was born, he began to cry and he wouldn’t stop. He was grunting, wouldn’t eat, wouldn’t sleep and nothing I could do would soothe him. Becoming concerned, first the midwives and then the nurse practitioner checked Adam before telling me he needed to be taken away for tests. I later learned he was taken to Neo Natal Intensive Care where his entire body began to shut down. He stopped breathing and turned blue. His whole body was convulsing with constant seizures. He became jaundiced and bloated. The medical staff put him onto a ventilator, a brain monitor, a cocktail of antibiotics; they catheterized him and ran intravenous lines to feed him while attaching more lines to monitor his vital signs. The result was a medically induced coma as they battled to save his life. On Saturday morning, my baby looked like this:
Adam, 16 hours old
The next time I saw him on Sunday night, he looked like this:
Adam on Sunday night
On Sunday, the doctors told us they believed he was fighting a deadly infection called Group B Strep (GBS) Meningitis and that his life was very much in danger. On Monday they performed a lumbar puncture and the results on Tuesday confirmed it.
Neither of us had ever heard of GBS so we were shocked when we learned that around 1 in 4 women carry the bacteria naturally in their gut. There are no signs or symptoms to tell a woman whether she’s a carrier or not and in most cases, it doesn’t cause any health problems…except for twice in life – it can be deadly for the elderly and most importantly in my case, it can be deadly for babies. During birth, the bacteria can migrate from mother to child causing a life threatening infection. Can you imagine how I felt to first learn my baby was fighting for his life and then to understand this was because of bacteria I had given to him? Take it one step further and imagine how I felt when I learned that, despite there being no visible symptoms to tell a woman she is a carrier, that an incredibly simple swab test during pregnancy could have told me I was a carrier? Or that with a positive swab test; a simple dose of penicillin during labour could have protected my son? I was utterly horrified, overwhelmed with guilt and grief and terrified that my son was going to die. Why hadn’t anyone told me about this? The midwives whom I saw regularly during pregnancy? The consultants who monitored my “high risk” pregnancy (I am asthmatic and overweight) and continued to assure me that everything was fine? All of the tests I was given for conditions that could not have been prevented and yet the very one that was risking my son’s life could have been? WHY HAD NO ONE TOLD ME????? My husband has described these as the darkest days of our lives and he was right. Over the next twenty-three days, my son slowly clawed his way back from the brink of death one (literal) baby-step at a time. The care we were given at the hospital was extraordinary as the doctors and nurses battled around the clock to save Adam’s life.
The first time Adam opened his eyes
We later learned that during the first week, the hospital had put our local health visitor on standby to expect to deal with a bereaved family. One of his neonatologists told us she spent more than one night – the entire night – standing over Adam’s incubator dosing him with more and more and more anti-seizure medication to try to stop the convulsions. The first time Adam’s health visitor eventually met him she blurted, “He’s still got all his limbs – that’s wonderful!” It was one shock after another, one trauma after another, all mixed up with an impossible hope as my son began to recover.
But during those dark days, we were warned that even if he lived, Adam was at risk of a seemingly endless list of disabilities that ranged from cerebral palsy, epilepsy, brain damage, paralysis, amputations, mobility problems, deafness, blindness, learning difficulties….the list went on. Possible break point? After 23 days, Adam had recovered enough to be able to go home. Now, sixteen months later, Adam is hearing impaired with a rare condition called dyssynchrony which in essence means he may be able to detect sound but not understand it – imagine listening to a staticky radio station or a foreign language all day, sound is there but it is meaningless. He has nystagmus which means his eyes wobble continuously from side to side. He is still under the care of five consultants at four separate hospitals, he has a Teacher for the Deaf who visits the house on a monthly basis and is just about to be referred to a similar Teacher for his eyesight. We receive disability benefits and carers allowance on his behalf.
Adam in February 2012
All of this could have been prevented with a simple swab test performed between 35-37 weeks of pregnancy and an equally simple dose of penicillin during labour. The NHS do not perform this test. They do not even tell women about GBS. They also do not tell women the test is available privately at a cost of £35. They do not tell women that if GBS is discovered, privately or accidentally during other less reliable tests, that NICE guidelines state it MUST be treated. GBS carriage can come and go, in can be present in some pregnancies but not in others, it can be present at different times of pregnancy. This is why the swab test is most accurate when performed in late pregnancy because the result can be relied on for up to four weeks. Introducing testing would save around £27,000,000 per year as the cost of treating those babies who are infected and then providing ongoing health and disability support is far greater than the cost of the test. The NHS prefer something called the “Risk Based Approach” where women in labour are monitored for certain signs that might (or might not) indicate the presence of GBS; these include a high fever, a long period between waters breaking and labour beginning (more than 18hrs) among others. These signs are not always present and unreliable even when they are. They are also complicated and in the stress of the labour ward, it is very easy to miss them – my waters broke 29hrs before labour began and so according to current guidelines, I should have been told about GBS and offered penicillin but I wasn’t.
In the last year, I have received a great deal of support from a charity called Group B Strep Support or GBSS who have educated me about GBS, helped me understand the current guidelines and for whom I have shared Adam’s story with the media in an effort to raise awareness. This charity was founded by Jane Plumb MBE, a woman whose second son died when a GBS infection caused his premature birth.
Adam on his first birthday
The charity has been campaigning for a change to the NHS policy since 1996. Many other countries do routinely test for GBS during pregnancy and offer penicillin during labour to women who test positive (for those allergic to penicillin there are other options). These countries include: America Canada Australia France Germany Kenya Slovenia …and a number of others. Since GBS testing was introduced, the infection rate in America has fallen by 86%, in France by 76% and in other countries by similar levels. The infection rate in the UK continues to rise, year on year, and while there are around 340 confirmed GBS infections per year, studies estimate the figure could be as high as 1,000 because some infections are not diagnosed or reported. Of the 340, around 75 babies per year will die and while many recover fully, others will be left with permanent disabilities – as my son has been. In 2003, the UK National Screening Committee refused to introduce testing but agreed to the Risk Based Approach. In 2008 the evidence was reviewed and the same members of the UK NSC again refused to introduce screening. Just last week, after another review, the same members of the same committee have again refused to introduce GBS testing. They say: "The evidence published since 2008 has not substantially changed the evidence base regarding GBS screening, and therefore does not support a change in policy....It remains difficult to weigh up the benefits and harms of antenatal GBS screening."
"Policy Position: Screening for this condition should not be offered." http://www.screening.nhs.uk/groupbstreptococcus Currently, GBSS are working on translating their 84pg document explaining this decision into a brief summary which all of us will be able to understand and they hope it will be available in around two weeks time. Here’s the key fact: This most recent decision is at the moment, provisional. There is a public consultation period which lasts until October and members of the public are invited to write in to say whether they agree or disagree with this decision. So please, stop and ask yourself this: If you were pregnant would you want to know about GBS? If someone you know or love is pregnant, would they want to know? Would you – or they - want to be given the choice to either be tested or to receive antibiotics if it meant their baby would be protected from GBS?
If the answer to any of these questions is yes, please would you email email@example.com and tell her this? If enough of us write in, this can influence them to change their minds. Please, for Adam’s sake and for the sake of all the babies who are infected by an entirely preventable deadly infection every year, write to Esther. If you want to know more about GBS, or learn how to buy a private test, please contact Group B Strep Support at www.gbss.org.uk or 01444 416 176. If you want to read more of Adam’s ongoing story, please visit my blog at www.walkingforadam.blogspot.co.uk