Meningitis in your words

Thomas James Cantan's story

  • Location: England
  • Categories: GBS (Group B streptococcal)
  • Age: Young child 3-5
  • Relationship: Child
  • Outcome: Recovery with after effects
  • After effects: Co-ordination problems
Thomas James Cantan

Thomas was born on Sunday 19th September 2010 weighing 9lbs 1oz after an extremely painful but quick(ish) labour. Thomas is our second child.

He was beautiful but due to his extremely quick delivery I had to go to theatre for a little patching up so didn't get the easy after bit.

Thomas was quiet and no problem in the first few days but very early on my gut instinct was telling me that something was wrong. I called a midwife who assured me he was just being fussy and that it was usual for some baby's not to feed every two to four hours but sometimes six but I was having to express to keep my milk.

"I didn't feel any better so kept the phone next to my bed while Thomas continued to look distressed"

On the Tuesday he wasn't himself, he wouldn't open his eyes and didn't feed after 7am. I had to strip him down at 4pm, bath him and then he snacked. I called the midwife again so said to give him time to settle into a routine.

By the Wednesday I wasn't happy but we went out to visit some friends, he was irritable and just looked grumpy. I wanted to to get him home.

Things didn't improve so we went to a local maternity unit, they checked him over. Assumed it was jaundice so sent his blood work off to the hospital for a quick turn around. I expressed some milk and he finally took a bottle.

But it was only the beginning as they assure me it was better for us to be at home. I wasn't convinced as we went home and settled him for the night.

Well he wouldn't settle. I spent all night watching his crib as he was grunting and groaning and whimpering in a way I didn't like. The hospital called at 12midnight with the blood results 'that it wasn't jaundice!' I explained that he hadn't eaten yet and seemed distressed when I tried. She assured me that he had a big feed at 6pm and that it was natural for him to sleep through his next couple of feeds.

I didn't feel any better so kept the phone next to my bed while Thomas continued to look distressed. At 2am, I tried to feed him and he turned his head away and wouldn't try so I tried another bottle and even tried a little on my finger to entice him but he became even more distressed.

I called the maternity unit again and the midwife suggested I bring him back so she could check him over and we could try and get him latched on. I think they were convinced it was me not him! As I said 2nd baby!

I arrived just before 3.30am and he whimpered and made an awful high pitched groan the whole 20 minutes to the hospital. He wasn't happy and I could feel it.

The midwife laid him on the bed and stripped him and he was tiny compared to his birth and was bright yellow. She tried to feed him but he wouldn't take it. She called the main hospital who still declined they had a bed for him but she insisted as he now weighed 7lbs 11oz that he be seen by them, if for nothing but to be fed by tube so he could get his strength back.

I arrived at the main hospital shortly after 4am and he seemed peaceful as we entered the assessment centre. It was quiet as they looked him over and seemed convinced that it was jaundice and that with a little food he'd get his strength back and be okay. 

"It was probably the longest day of my life as doctors came in and out and told us bits and pieces"

They tested again for jaundice and took him away to fit a feeding tube. It was the longest hour of my life.

He came back to me and the nurse fed him a bottle of milk and I was almost relief as we were moved to the ward while they awaited his new test results. It came back clear for jaundice but this time they knew he had another infection.

It was probably the longest day of my life as doctors came in and out and told us bits and pieces. It was just after lunch that Thomas took a turn for the worse and doctors decided they want to try and get a central line into him so he could be treated more easily. They took him away for at least an hour but unfortunately his veins were flat so they couldn't do anything.

The doctors returned with bad news that it was GBS and I looked down at the tiny bundle in my arms and told myself he was going to die...that nothing could protect him from the infection.

They assured me that they would do everything they could to help him. We called our family members, some who had even met him yet and they all travelled to see him because we really didn't know what was going to happen.

The doctors took him away again and for longer this time as he'd had to be resuscitated twice as he had two mini seizures.

The moment they bought him back I felt so much emotion when I saw his little eyes looking at me. I hadn't seen them since the Monday morning and now it wa the Thursday. But at that moment my eyes locked on his he stopped breathing, went blue and they had to resuscitate him again.

They took him straight back again and had to ventilate him which meant we had to move to PICU where Thomas spent four days fighting for his life and then fighting a breathing machine.

We spent three weeks in hospital together and he was such a little fighter. He never gave up once and he's continued even now.

Thomas has recently started at special needs school and is behind in his development especially with his speech and communication. He has cerebral palsyand epilepsyand struggles to do things independently but he has so much determination for someone so young. He never gives up and will try and try again.

He has an infectious smile and is an amazing little boy who has a long way to go but we wouldn't have him any other away.

Gemma Canton