It took multiple hospital visits before doctors finally diagnosed Noah, who was only 12 days old, with group b streptococcal meningitis. Here, Sarah shares the story of her nightmare.
Noah was born at 38 weeks after being induced as I had gestational diabetes. I had been tested for group b strep during my pregnancy and the test result was negative. Noah arrived 30 hours after my waters had broken. After 36 hours in hospital we were discharged after Noah was given a clean bill of health.
When Noah was eight days old, I sensed that something wasn't right. He spent the evening crying and then went very flat and quiet; he got very hot, looked pale and then vomited. We took him to A & E in the early hours of the morning and Noah was observed for five hours, but then they sent us home.
Back to the hospital
When we came home, Noah continued to vomit and be generally unhappy. We went back to the children’s ward within two hours of being discharged. Noah was observed for 24 hours before we were again sent home.
I spent that 24 hours crying and insisting that I felt there was something wrong with my baby. I was told to ‘take him home and enjoy him’. He never had a temperature in the time we were being observed, so the staff were not worried about him. I have since learned that group B strep meningitis does not always present with a temperature.
We spent the next two days still feeling that something wasn't right with Noah, but we desperately tried to convince ourselves we were being neurotic parents; this was our first baby.
On Saturday 22 September we went to a local country show determined to have some family time, but we were still unhappy with Noah’s condition. He had lost his appetite and still seemed unhappy in himself. We got him home and he went from jerky, to very sleepy, then he startled and his eyes flickered.
Insisting on action
We rushed Noah again to A & E and even though he had no temperature, we were seen immediately and rushed to resuscitation, but we were almost sent for more observation. Thankfully we insisted that a full septic screen was carried out on him.
The hospital could find no evidence of any bug but they could not carry out a lumbar puncture until after they had started him on antibiotics due to his potential fits. The lumbar puncture was done the next day and Noah’s cerebrospinal fluid was thick and they told us they were almost certain it was meningitis. Our nightmare had begun.
We spent the next four weeks at our local hospital, with Noah being treated on a ward initially and then moved to intensive care where he worsened dramatically after a week. He was put on a ventilator and then they discovered he had hydrocephalus and that he would need an operation to insert a drain into his brain to take away the fluid.
Diagnosis at last
Noah had the drain for two weeks before it was removed and he seemed to really improve. We were sent back to the ward, with dreams of going home after four weeks in hospital (three of which were in intensive care) and he finished his course of antibiotics.
At this stage our local hospital was still unable to confirm the strain of Noah’s meningitis, despite having numerous tests, but they strongly suspected that it was group b strep. This was later confirmed.
Another set back
Later on, Noah went to sleep on the ward and woke up screaming and being violently sick. Further tests revealed that the bug was back. We were back at the beginning, but with a much weaker baby. He started to fit again, didn't open his eyes and wouldn't feed.
We were transferred for specialist care at Newcastle Royal Victoria Infirmary where Noah was again sent to intensive care and put back on a ventilator, after his condition got even worse. We were convinced we were going to lose him. A further scan revealed liquid on his brain again, so another drain was inserted. He had this for another week and then it was decided that he would need to have a shunt fitted to keep the pressure from building in his head.
Getting better every day
Noah had his operation in October last year and from that day he has gone from strength to strength. We were discharged two weeks later and could eventually go home and start a proper family life. He is doing amazingly well now, but there are still a lot of hurdles to get over with his developmental milestones and checks.
He has lost some hearing in both ears so needs some little blue hearing aids. His hair is growing over his shunt and his many physical scars are healing well. He has become the happiest, most smiley ten month old you could ever meet and we just have to look at him to know what a miracle he really is.