Group B Strep meningitis
Ellis was born on 22nd March 2008. I had a high vaginal swab taken the day my waters broke to check for any sign of infection. I was admitted to hospital at 8am and was induced at 10am. I was not offered any antibiotics although I was told we could not leave until the next day as we were at high risk of infection.
Ellis was delivered at 4pm and appeared healthy; we were discharged the next morning after all observations were satisfactory. We had our temperature checked twice while in hospital.
It was Easter Sunday and Ellis was a very contented baby who fed and slept well. We were visited daily by the community midwife until day five; she asked if we were happy to leave the visits over the weekend. We had raised concerns that he had been unsettled and had diarrhoea so she gave us a number to contact if we had any concerns.
When Ellis was six days old he appeared unsettled again and refused a feed in the evening, which was unusual. The next feed was at midnight and Ellis had one ounce of milk, vomited and went back to sleep.
He woke again at 4am but refused his feed and appeared sleepy. I became aware of a strange noise he was making; I thought he had wind and tried all sorts to relieve him. I put him back in his cot but grew anxious as the sound was almost like a grunt.
I contacted NHS24 and spoke with a nurse and described this noise and told her he had vomited and refused a feed. She asked to listen to him over the telephone and immediately called an ambulance.
We were terrified as everything happened so quickly. I could see in the ambulance he looked pale and was sleeping. He continued to make the grunting sound. We arrived at casualty and were seen by a doctor who thought it was maybe a chest infection. He said we would need to be seen at paediatrics for a second opinion.
Ellis remained sleeping although the 'grunting' seemed to come and go. He was seen at paediatrics by a nurse who said he appeared to be well and we would have to wait for the doctor.
The doctor suggested when he had been sick it had blocked his nose and this was the reason for the grunting noise. Ellis' dad was shown first aid techniques to use if this happened again. He was also told that if he had a feed he was free to go home.
I was not convinced and was even more concerned when the doctor returned and asked if he had taken his feed. When I said he had only had one ounce, she said he could go home. I tried to ask her more but was ignored. He had only had one ounce of milk since midnight and it was now 10am. This was not the feeding pattern he had since birth. I felt we were treated as over anxious parents. We were asked several times by different medical staff if this was our first child. Ellis had two older brothers aged 16 and 5.
We left the hospital and Ellis remained pale and sleepy. We went to bed once home and again he refused his feed and slept until 4pm. He woke up and let out a high pitch scream then began screaming like I have never heard a newborn scream. Nothing I tried pacified him.
I immediately called his dad to come home from work. We called NHS 24 and were again told to take him to the health centre. He was groaning at the slightest touch and was becoming paler and I knew he was extremely ill. We were told to take him to hospital and on the way he seemed to be almost pure white. I was screaming at my partner to drive faster as at this stage I knew he was seriously ill.
On arrival at hospital we were told to sit in the waiting room, waited for a short while then had to ask to see a doctor immediately as he was clearly ill. He was ghostly white and his hands and feet were cold to touch. He was immediately taken into the bay and monitored. His heart rate was over 210bpm and when the doctor rushed over his face became blotchy and his eyes rolled back. It was only now things began to move.
He was immediately admitted to HDU and they were trying to insert a line to administer antibiotics. This was awful for us to watch as he was constantly moaning and because of his size it was difficult for the doctors to find suitable veins. They also brought a scanner to his bedside to ensure there was no chest infection as was mentioned earlier at casualty.
We were told he was about to have a lumbar puncture and it was only at this stage meningitis crossed my mind. He rapidly went downhill and was foaming at the mouth and staring blankly. He was still groaning although it was now constant.
It was now 10pm, 16 hours after Ellis was first admitted to hospital and 12 hours after he was initially discharged home.
The doctors were inserting lines into him to administer the antibiotics; it was 2am before we were told it was likely to be a form of meningitis, probably Group B strep. This was the first time we had heard of this type. We were told he was very sick and the next 48 hours were critical and that there was a high chance he could be left brain damaged. We were told it was passed from mother to baby during delivery.
I felt guilty that I had passed this on to my baby. I didn't even know what it was and how I came to have it. I was devastated and my partner was physically sick at what we were being told. We were absolutely terrified, I couldn't bear to watch him so ill and listen to the machines beep and alarms sounding every time his heart slowed down. It was a living nightmare watching our baby so ill and fighting for his life.
Ellis was confirmed as having Group B Strep Meningitis on day three and again his antibiotics were changed as they were now able to confirm which drug was sensitive to these bacteria.
He also had a cranial ultrasound to check if there was any bleeding from the brain. This was performed twice as he had a lot of jerking movements during the first four days of his illness.
There was very little information given to us about this condition and we relied on family members printing information from the internet and bringing it to us at the hospital.
I wanted to believe he would pull through but kept thinking about our friend's son who had passed away 18 months previously with meningococcal meningitis aged five months. He had passed away five hours after being admitted to hospital. Ellis had not been treated for 16 hours after his symptoms began and was only seven days old.
It was only at this time I could fully understand the devastation they went through and admired them for the messages of support they sent us during Ellis' illness.
When Ellis was admitted to hospital he had no name as we were undecided, we prayed we wouldn't be registering his birth along with his death.
Nothing seemed real; we didn't sleep or eat for two days before being ordered to by the nurse. We had a room in the hospital but I was actually terrified to sleep.
The strain it brought on us as a family was devastating, especially the older children seeing us upset and having to be apart from us while Ellis was in hospital.
Ellis eventually had to have a central line inserted under general anaesthetic as he had no other veins that were any use.
Fourteen days after being admitted Ellis was finally given the all clear to return home which was a huge relief for everyone.
He was admitted five days later with suspected seizures after turning rigid; he had a CT scan and an EEG which appeared normal, although epilepsy could not be ruled out. He continued to have shaking movements until 11 months old. They were believed to be benign sleep myclonics which was a huge relief.
I have never experienced such intense fear and guilt that I had passed this infection onto my baby without knowing. We will never know whether I did pass this onto Ellis during delivery or whether it was picked up in the hospital.
Once Ellis was discharged I decided to find out more about the results from the swabs that were taken from me before delivery and the swabs taken from myself and Ellis after delivery. Initially the results had gone missing but after a few months they appeared and we were told all swabs were negative for Group B Strep and any other bacteria.
I was baffled as to why all the earlier swabs from me and Ellis were negative yet he had a confirmed case of Group B Strep meningitis. I later discovered that there is a high rate of false negatives, as much as 50% for the type of test I had - a HSV (high vaginal swab).
If I had been aware of Group B Strep I would have gladly paid for this test privately. I feel really strongly that all pregnant women should be given the chance to be tested or at the very least be given information about this condition and where to seek a test privately.
Ellis is now 18 months old and a boisterous happy little boy; he does have unexplained screaming fits which at the moment we don't have any answers for. He appears to be in pain but only for short periods, but whether this is a result of meningitis or the other infections he developed we can't tell at the moment and the doctors still don't have any explanation to date.
Ellis has been investigated for immune disorders due to the number of infections he has had since birth and he continues to be monitored closely.
He has had two hearing assessments and will be tested again shortly as he was doing too much checking as he seemed to know what was coming next during the test. We have no concerns with his hearing.
Ellis also tested positive for other infections (C Diff and E-Coli urine infection) shortly after leaving hospital which again I knew something wasn't quite right. This was always put down to the strong antibiotics causing the symptoms.
If you believe your child is unwell go with your instincts even if it does ruffle a few feathers.
I am so glad I followed my instincts and pushed for further assessment of my baby. The consultant also said we were very lucky as things certainly wouldn't have been as they are now if I had listened to the doctor who initially examined Ellis.
Although some may say Ellis has been unlucky due to the Group B Strep Meningitis and other infections he caught, I think he is a very lucky boy that he survived his illness and has progressed so well.