WRITTEN BY MOTHER AMY
Kaiden was my first child, I was 17 when I fell pregnant with him. I gave birth to Kaiden at 18 and was instantly in love with him. The midwife was doing all of his checks and said his soft spot on his head was very large! But was normal. My nan kept saying she had been having dreams that something wasn’t right, and she prayed for a fix for him.
Months went by and Kaiden wasn’t hitting his milestones. He couldn’t crawl, he couldn’t hold a bottle and never walked. I fell pregnant again when Kaiden was 3 months old and had the home midwife come around when I had my daughter. She saw the size of Kaiden’s head and noticed how limited he was and made me a doctors appointment. I went to the doctors and they said Kaiden’s head was on the 95th percentile but still normal! I demanded a referral to the pead/ specialist.
WRITTEN BY MOTHER STACY
Early hours of 10th April 2019, Our sweet 11 month old Charlotte Joyce was rushed to Brisbane from Rockhampton via RFDS with suspected Salmonella Meningitis. She was placed in the NICU at Queensland Children’s Hospital where she was prepped for an MRI for the next day.
We received a phone call to come back to the NICU were we were confronted with seeing our little baby girl still anaesthetised and had several Senior Medical Professions looking at her MRI results.
The results showed that Charlotte had two large brain cysts and Hydrocephalus.
WRITTEN BY MOTHER LOUISE
Jack’s journey began when he was 7 months old and his head circumference was jumping high above the 95th percentile. Despite this he was still doing the typical things – rolling, sitting, etc and was the happiest little man! A check ‘just in case’ on ultrasound revealed marked hydrocephalus and an appointment with a neurosurgeon planned. Before that appointment could be booked, Jack suddenly became symptomatic and we rushed him to emergency.
Jack had his first VP shunt placed and so began this rollercoaster ride. Jack had a good few years before our world turned upside down with his first shunt blockage, the trauma that involves and first shunt revision surgery. The next 18 months we had another blockage and revision, intermittent blockages and one further shunt revision surgery making it four hospital stays with three surgeries.
My hydrocephalus journey started 14 years ago soon after I was born at 25 weeks gestation in Perth WA. I ended up with post meningitic hydrocephalus with aqueductal stenosis which started a roller coaster ride of surgeries, recoveries, revisions and hospital stays for observation.
I don’t remember those earlier years of surgeries but my parents tell me about them and show me photos. I had my first VP shunt put in at a few weeks old. I then had a new programmable shunt valve put in a few years later, but the original one was left in there.
I’ve had blockages, a cyst formed which is now also drained, more blockages, and a complete disconnection with the tube ending up coiled in my tummy. My left ventricle is large and there was much discussion about shunting that side too, but it was decided not to.
Two years ago I began to experience feeling like I had too many alcoholic drinks all the time. Driving and walking became challenging. I also had an unwavering brain fog and needed to urinate very often resulting in many accidents because the urge was so strong. Everything I did was impacted. My confidence and sense of independence declined. I was referred to a neurologist and neurosurgeon who could not reach a conclusion between them.
I am relatively young to present with this condition and I don’t have the ataxic gait which comprises Hakim’s triad of symptoms. I would not receive treatment rather had many blood tests, scans and persistent enquiries into my mental state searching for an alternate explanation. I was feeling low because as time progressed, my symptoms continued and my quality of life eroded.
The neurologist threw his hands in the air clearly frustrated with me. I decided I needed to consult with someone else. I had been told about a practitioner in Brisbane who had done a lot of work in this area. Thankfully I met with him. He was confident, decisive and reassured me not everyone presents with the same symptoms, everyone is different. This doctor has taken excellent care of me and I will be forever grateful to him.
WRITTEN BY MOTHER KERRYN
During routine baby checkups at 8 weeks old, Henry’s GP had noticed that his head circumference had rapid growth since his previous checkup. From a short time after birth, Henry’s eyes seemed to look a little alarmed, which progressed into sunsetting eyes.
He was closely monitored by our GP for head growth over the next few weeks and then sent for an ultrasound of his fontanelle which showed extra fluid in his brain. He was sent to our local hospital for an MRI the following day, which revealed he had an arachnoid cyst that looked to be partially blocking the flow of his CSF.
The doctor explained that Henry had hydrocephalus and that he would be sent to Brisbane Queensland Children’s Hospital the following morning to consult with neurosurgeons.
WRITTEN BY MOTHER AMANDA
Addison was born six weeks prematurely and spent a week in the Neonatal Intensive Care Unit at Nepean Hospital, Penrith. She had to have CPAP Oxygen for the first two days of her life and spent the next five days in a humidicrib. We thoroughly enjoyed finally holding her in our arms after this worrying first week was over. She also got to meet her big sister, Grace aged three years old too.
At 12 weeks old, Addison spent a week in hospital fighting a mysterious illness which made her breathing very difficult. Doctors thought it was at first reflux but after many tests, we found out that she had contracted the ‘Respiratory Syncytial virus’ which is known as ‘RSV Bronchiolitis.’ A premature baby that is six months of age or younger is at especially high risk for severe RSV disease as they were born before their lungs and respiratory system could fully develop.
After one week of being in hospital, Addison became very unstable and was struggling to breathe. All I could do as a mother was to express my breast milk, pray and hope that it might provide Addison with some strength, immunity and a chance to fight this awful virus. A change of overnight Doctors and pleading from me to help caused a change in hospitals that saved Addison’s life.
First diagnosed at five months I have battled hydrocephalus through my childhood and adult life. I’ve had seventeen shunt revisions, my first VP Shunt was implanted into my brain when I was two years old.
I have struggled with epilepsy that has been put upon me by the hydrocephalus, I have seizures nearly every week. When I was young I died in the operating theatre during surgery and I was very lucky and grateful for the surgeons to bring me back to life. Throughout my teens I struggled to gain weight and dealt with a large amount of depression, missing a lot of school due to being in hospital for large periods of time.
I am now 23 years old, I am studying journalism at the University of Wollongong with the aim of a future career in foreign and war corresponding. I also have a future determination for studying a PhD in international relations.
For those who live with Hydrocephalus, never let it stop you!
WRITTEN BY MOTHER AISHA
Logan was diagnosed with a bleed in his head less than 2 weeks after birth. He was was transferred from the hospital to the children’s hospital in Sydney and the next day he had a Rickham’s reservoir inserted. The doctors spent 2-3 weeks draining the excess fluid through this until his neurosurgeon decided that a shunt was needed. He had his first shunt put in at 2.5months old.
During this time in hospital, we had various hearing tests done as Logan had been “referred” for his right ear. It was then diagnosed that Logan had no hearing in his right ear.
We had further revision surgery in September and then again in December of 2017. The December surgery was tricky as the doctors removed everything from within (reservoir and shunt) and connected Logan to an external drip until he was considered operable and there was no infection. During this wait he over drained and ended up in ICU. He was released 2 weeks before Christmas.
Logan is now 5 years old and has been surgery free since December 2017. He is now been further diagnosed with bi lateral hearing loss and is also aided in both ears.
Logan has a instagram account and you can follow his journey here @masterl_journey
I’m 23 and have just had my 4th shunt revision. My last shunt lasted me 18 years with no complications and I truly thought maybe I was one of the lucky ones and my shunt was going to last me forever.
I was wrong and after a flight away on holiday my unknowingly broken shunt at the time couldn’t handle the pressure in the plane. I was 5 when I had my last shunt revision so I had no idea the pain I was in was my shunt not working, I couldn’t remember the last time.
The pain felt like I was having a hangover and it just wouldn’t ease. My biggest sign was I couldn’t lift my head up without vomiting. I thought I was living a completely normal life like everyone else before my body reminded me I wasn’t.
I’m in it with every other hydro warrior!
I don’t normal put this out there. But with not much information knowing about Hydrocephalus (40- 50 age group) and NO CURE!! I thought it was time say something…….
In 2016 at 47 years old, I was emergency rushed by plane to Melbourne ( 3hrs away from my home). After suffering from headaches, blurry vision, incontinence for about 1 week. There I was diagnosed with having Hydrocephalus. I was fortunate enough have one of Melbourne’s Victoria, leading Neurosurgeons Prof Gavin Davis, operation on me. Who performed an procedure called, Endoscopic Third Ventriculostomy. Which basically means, a small camera attached to a surgical instrument is inserted into the brain. A tunnel is formed to correct the fluid flow, which is causing the underlying Hydrocephalus. I am one of the lucky ones at this stage that have not need numerous brain surgery, like lot of people suffering with Hydrocephalus.
I have unfortunately have been left with vertigo and fatigue issues. This can be challenging most days as I was a fit and healthy person beforehand who didn’t smoke cigarettes or drink alcohol. I jog-walk 6kms an day with my dog and had healthy eating habits. These days, I am flat out walking 2kms, due to the vertigo which then brings on the fatigue.
But way I look at it there are other people who have Hydrocephalus worse off than me!
WRITTEN BY MOTHER DANNI
Our son, Noah, was diagnosed at 7.5 months old with congenital hydrocephalus due to acqueductal stenosis. From 4-6 months of age his head began growing rapidly compared to his height and weight and a scan at 7 months old confirmed hydrocephalus.
Noah had an operation for a VP shunt a day later as his head growth accelerated even more (11cm in circumference in 5 weeks).
After his surgery we noticed so many changes – he started baby babbling, he had much more hair than we realised, he began to sleep better and sitting upright unaided. Leading up to his diagnosis he was waking every 30-45 minutes through the night due to being in pain.
I was born with a severe case of hydrocephalus, mild cerebral palsy, and a brain injury.
The VP Shunt prevented any cerebrospinal fluid from entering the ventricles into my brain. Before the procedure, my parents were told that the CT Scan showed 98% of my skull full of fluid. Doctors told my parents that I may be unable to walk or talk, and might even get lost in the backyard.
When I was 2 years old, I had a cranioplasty. My head was disfigured due to the bone flap sticking outside of the cranial region. Statistically, there is a 15% chance of survival rate for infants. Doctors, and surgeons operated for 8 1/2 hours straight.
Reconstructing the skull, and inserting a metal plate to maintain its form, and shape. Standard procedure is 1 1/2 hours, but there were complications during surgery. Blessed to be alive with no brain damage, and now I’m living life as normal as everyone else.