Meningitis in your words

Jacob Gregory Madden's story

  • Location: England
  • Categories: Pneumococcal
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Hearing problems
Jacob Gregory Madden

It all started back in November 2006. Our beautiful healthy little boy was born, weighing a healthy 7lb 6 and a half ounces.

At about eight weeks of age we took him to our local doctor for his check up, and he was given his vaccination and health check. I questioned the doctor about a ‘rattle’ on his chest as I didn’t like the sound of it. The doctor told me it was ‘normal baby rattles’. A few days later I started to notice that my little boy was turning a little yellow. This rang warning bells, so I took him to the doctor and they checked him and sent him home.

The next day was like any normal day. He was a little off his breast milk but otherwise fine, then I put him down for his midday sleep. He woke up half an hour later with a 39 degree temperature so I took him straight to the hospital in the small town where I lived. The doctor came and checked him over and said they thought he had a chest infection, so admitted him, and sent him by ambulance 100km to a bigger hospital. As we were being loaded into the ambulance a quick-thinking doctor gave him a dose of some medication, because we had a long trip.

"I was told he had a 3% chance of survival"

We got to the other end and my tiny little 10 week old baby was hooked up to drips of antibiotics and x-rayed. They found something but I wasn’t informed of what it was. His temperature got worse and went to 40 degrees and he was extremely lethargic and floppy.

Later that night, my baby started to cry and a quick-thinking nurse called the doctor in with the symptoms of a temperature of 40 degrees and a possibly bulging fontanelle. It was close to midnight, the doctor was there within eight minutes... It felt like hours. They did a lumbar puncture and I cried as I heard his cries of pain as they did it.  A nurse held him down. The doctor came back to me and told me that it "might be a little cloudy" and sent it to pathology to get it tested.

A few hours later my little man was having seizures and was screaming then would go all floppy. The results were in... It was MENINGITIS. They didn't know what strain or what to treat it with, so they put him on broad spectrum antibiotics and told us to prepare for the worst, and to say goodbye.

Over the next few days they grew the cultures and worked out what medicines were to be used. In this time my little boy went along a rollercoaster ride, up and down, always running this horrible fever and having seizures. They couldn’t move him to the intensive care unit, because he was in an isolation room and would have seizures every time he was moved, so they had a nurse sent to him. They didn’t give him any pain relief as they didn't want to hide any of the symptoms.

A few days in, he had a seizure that lasted hours, I was told to prepare for him to pass away, and to say goodbye,( I was told he had approximately a 3% chance of survival) and if, by some miracle he did pull through, that he would never walk, talk or interact and would need ongoing medical care. We were devastated, but truly believed he would pull through. In my mind he had to, he could have hearing aids or glasses... he would be fine.

That night felt like years. His drip kept on clogging up, they put it in both arms and both feet, then they wanted to put it into his head straight into his fontanelle to give him what he needed.

The next morning came and we had a result back, BACTERIAL PNEUMOCOCCAL MENINGITIS... But how, he had his pneumoccocal vacination?

His drip had completely stopped at this point in his foot, so they agreed to give him four-hourly injections into his legs of the medication that would make him better.

I was told by a doctor at this point that the next few days, even weeks, would be a test for his little body. Everything was looking good, he was making progress, then I started to notice a rash spreading over his body. The doctors told me this was the start of septicaemia, and if he pulled through he may need amputation, and got me to read info about it. I was horrified, but was willing to do whatever it took to keep him alive.

That afternoon, the fever dropped a little, and the rash got worse. He didn’t like the light on, and screamed a cry that was so high pitched, it was strange.

We followed this journey for a few days and nights, one blending into the next. I was still breastfeeding, as best I could with a baby who would have seizures, and would fall asleep in the chair while feeding him. Soon I was not able to feed him anymore, and we hoped for a miracle...

We got it! He started to make a recovery. At day 14 in hospital they let me go home, as long as he still got the needles every 4 hours.

I walked out of the hospital with my little boy in my arms, with nothing more than a slight hearing loss caused by the meningitis. As I was being discharged the doctor told me something I will never forget. He said: "He survived because you did everything right, you had luck as well with the doctor who picked up on the bulging fontanelle and the nurse who recognised his cry and called me..... But the thing that probably saved his life was the fact you had him immunised..." (Immunised eight days before he got sick).

Now five years later, he has 100% hearing, but still has issues with volume control due to the hearing loss, he walks, talks (a lot), interacts etc. He has been about six months behind with all his milestones, but is otherwise healthy and happy.

I had my husband and a great support network of family and friends there with me through this, for which I am extremely grateful.

Nicole Madden
May 2012