Amelia's Story - iMRI Scanner Appeal

Amelia was transferred to the children's hospital at just 8-weeks-old.  Here mum, Annmarie shares her story and how an iMRI would make a big difference to her care... 

My daughter Amelia and her twin brother Michael were born prematurely in June 2014 at Wigan hospital with Amelia weighing only three pounds when she was born, half the size of her brother. Over the next few weeks I noticed Amelia didn’t seem to be developing at the same rate as William. She was vomiting often, would struggle settling to sleep and generally seemed like she wasn’t a happy baby.

I just knew that something wasn’t right with my little girl so we visited our local GP to try and get some answers. Amelia was just 8 weeks-old when she was transferred to Royal Manchester Children’s Hospital and her journey at the hospital began.

We were undergoing tests at RMCH to try and find out what could be making my beautiful little girl so poorly, when Amelia completely crashed, had to be resuscitated and was immediately transferred to the Intensive Care Unit. I was terrified to see my daughter so ill and was desperate to know what was wrong with her.

Amelia underwent her first MRI scans which showed up major problems in her brain. They showed that Amelia had a very complex condition were she had lots of little hemispheres in her brain which were filled with fluid, pus and infection.

It was then that we were given the devastating news that our precious daughter had contracted a very rare form of meningitis called Citrobacter koseri. The infection had led our little girl to develop a build-up of fluid on the brain known as hydrocephalus. 

I had a gut feeling all along that something wasn’t right with Amelia but never in a million years did I expect to hear the word meningitis and the bottom completely fell out of my world. I was also told that my daughter only had an 18% chance of surviving. No words can describe how I felt; it’s something you never expect to hear as a parent. I knew I had to be strong for Amelia and was thankful that she was in the right place to give her the best chance at life. 

Amelia immediately started treatment, with the first steps being a strong course of intravenous antibiotics which needed to be administered straight into Amelia’s brain to fight the infection. It was heart-breaking to see my baby being taken to theatre to undergo surgery to have an external ventricular drainage (EVD) fitted. The EVD was needed to clear the infection and drain the fluid from the ventricles of the brain.

My brave little girl spent 12 weeks in hospital with the EDV attached from her head.  Thankfully the infection was cleared and the next step for her recovery and hydrocephalus was to have more permanent drainage put in place, in the form of a shunt which helps clears the fluid.

We were finally able to go home at the beginning of December 2014 but since then we have been admitted to the children’s hospital five more times for further treatment when Amelia’s shunts have failed and the fluid pressure has built up.

We know the signs to look out for to monitor if the shunt isn’t working properly. Amelia will deteriorate very quickly, she can be completely fine in the morning, and then is vomiting by the afternoon and we know to ring the hospital immediately.

As Amelia’s condition is very complicated she has to undergo numerous scans before and throughout surgery as the shunts need to be fitted in exact positions. Even being a millimetre off can affect whether the fluid is draining properly or not, which could cause more potential problems for our daughter.

Because of how complex Amelia’s case has been, it’s easy to lose count of the number of times we have had a scan or been to theatre. Our little fighter has had over 150 scans and 50 brain surgeries. Now that Amelia is four, she is much more aware of what is taking place and is fearful of having MRI scans, so much so we have to sedate her when she is having a scan.

At the moment Amelia has two shunts in her brain and is doing well. I am amazed at the resilience she has shown, you won’t find a happier little girl and I couldn’t be more proud of her.

I can’t fault the staff at Royal Manchester Children’s Hospital. They have been absolutely amazing every step of the journey and have done everything they can for my little girl. Without them, she wouldn’t be here, so I can never thank them enough.

This new iMRI scanner will have a massive impact on the lives of so many children treated at the hospital which is why we will do everything we can to support this Appeal.