Our son Frank was born in March 2017. My pregnancy and labour were straight forward with no issues. When Frank was 3 days old (it was Mother’s Day) the midwife came to do some observations and check his weight etc and everything seemed great. However, overnight Frank became reluctant to feed. We rang the hospital and they reassured us and told us to strip him down to rouse him and keep trying. He was still refusing to feed so even though we rang and were reassured again we decided to take him into A&E at around 9am.
They weren’t concerned initially and wanted to send us home but eventually a blood test was carried out which showed that he did have an infection. We were transferred to the ward for further investigation including a lumbar puncture to test for meningitis. Once we were on the ward things went rapidly downhill, Frank had a seizure and continued to seize. He wasn’t responding to medication and had to be placed in an induced coma. The doctors performed a cranial ultrasound and that along with the results from the LP confirmed that Frank had Meningitis. He would need to be transferred to Kings College Hospital in London. We waited hours for the specialist neonatal ambulance but the team that arrived were brilliant. It was the paramedic who first mentioned Group B Strep to us. At that point no one had discussed what type of meningitis Frank had but she explained it was most likely to be GBS - an infection passed from mothers to their babies during labour and the leading cause of Meningitis in newborns.
Frank was placed in the Paediatric Intensive Care Unit at Kings. It was around 1am the next day. My husband and I were given a room to stay in down the corridor from PICU. Everyone kept telling us how critically ill he was. I remember asking over and over would he be ok but no-one would reassure us.
Overnight he had lots more seizures. The next few days were the most difficult of our lives. Family came up to be with us as we just waited to see if he would respond to medication. We feel so incredibly lucky that he did. After several days he came off the ventilator and began breathing on his own and not long after that we were transferred back to our local hospital to see out the course of antibiotics.
The medical team did try several times to explain the after effects that Meningitis caused. At that stage we just weren’t ready to hear it, all that mattered was getting our baby home which we did a couple of weeks later.
The months that followed were very difficult, for lots of reasons. Frank was a very unsettled baby. He would arch and cry a lot and feeding was getting harder and harder as he got older. As the months went by we noticed that his development was delayed and the worry that the Meningitis had caused long term damage consumed everything that we did.
I became obsessed with researching every sign and symptom and by the time Frank was 6 months old we knew that he had Cerebral palsy. An MRI at 14months old confirmed that he had a significant brain injury consistent with the after effects of Meningitis and he was diagnosed with Cerebral Palsy and Epilepsy.
It was a scary time and reading it all back I realise how traumatic it sounds but once we had accepted Frank’s diagnosis - which we had done completely by the time it was official, we haven’t looked back. Frank is 7 now and although he has Grade 5 cerebral Palsy (it ranges from 1, the most mild to 5 the most severe) he is the happiest and most amazing child. He is a full time wheelchair user and uses eye gaze technology to communicate (we’re in early stages with this but it’s incredible). He’s thriving at school and has so many friends. And he’s a big brother now.
I am still shocked at how few people have heard of Group B Strep. The NHS don’t routinely screen for it during pregnancy but you can test privately. If you are found to be a carrier you will be offered antibiotics during labour which is extremely effective. I am on my own little mission to tell everyone I meet about it and hope that by sharing our story it may help others. It can be hard to accept that what happened to Frank could have been avoided had I been tested but we try not to focus on that and just try to enjoy every minute together as a family because we know we are incredibly lucky that Frank survived this cruel illness.
I am still shocked at how few people have heard of Group B Strep. The NHS don’t routinely screen for it during pregnancy but you can test privately. I am on my own little mission to tell everyone I meet about it and hope that by sharing our story it may help others.