Feature member Sarah and daughter Violet.
Violet was born full term and it was devastating to hear after she was born, that she had been born with health problems.
It was last thing we expected, as at that stage we already had a healthy 4½ year old daughter, Emily. I had done all I could possibly do, to have what I thought was a healthy pregnancy, but some things you just have no control over!
We spent one week in the Special Care Nursery of the hospital Violet was delivered in. On delivery, her cord was wrapped twice around her neck and once around her body. The night she was delivered, she was given oxygen for 'a dusky episode', which means she went blue and was having trouble breathing. She also developed a high temperature, so she was put on antibiotics straight away. At one day old, midwives noticed her head circumference was quite big. They asked if they could do an ultrasound on Violet's head and I refused as I thought they were all nuts and being over the top.
In the end, I finally agreed. Only because I thought it would prove that nothing was wrong and she was a normal healthy baby and we could finally go home. The head ultrasound revealed she had a severely enlarged left ventricle, and the next day we were transferred to the NICU of the Children's Hospital where she had an MRI to further investigate this.
We then learnt the enlarged ventricle was a brain condition called Hydrocephalus (Build-up of Cerebrospinal fluid or CSF)
Even though it was confirmed Violet had a brain haemorrhage in utero, they still were unsure of whether this haemorrhage had caused her Hydrocephalus or some other unknown cause, so they decided to monitor her over the coming months before resorting to inserting a Shunt.
Her head circumference was still increasing as she was monitored over the weeks for her Hydrocephalus, so they decided to perform her first operation when she was 2½ months old which involved what's called an Endoscopic Third Ventriculostomy (ETV). This was to make holes between the ventricles in her brain so that the excess CSF would hopefully escape to the other side that appeared to be draining already. A Rickham's Reservoir, which is a small silicone device was also inserted into the front of her head. The reservoir is used to access CSF for diagnostic purposes.
Unfortunately her Endoscopic Third Ventriculostomy Operation was not successful in controlling her Hydrocephalus and CSF continued to build up.
She had her second Operation when she was five months old which involved inserting a Ventriculoperitoneal (VP) Shunt. This is where a catheter is placed into her ventricle which drains CSF from the ventricular system into the peritoneal space (abdomen) The catheter is connected to a pressure valve that regulates the amount of fluid drainage.
An MRI at birth also revealed Violet had two eye conditions in her left eye. These are PHPV and Microphthalmia. Her eye started to develop during pregnancy but for some reason stopped. Due to this condition, the eye is underdeveloped and blind.
Her eye conditions are inoperable and she has to wear a prosthetic eye over her Microphthalmic eye called a scleral shell, which she has been wearing since she was 4 months old. This stimulates the tissue around the eye to make the eye socket grow. She has bigger scleral shells made as her socket grows and this will all aid in her being able to look as normal as possible cosmetically.
At birth, Doctors also noticed Violet's left side of her body was smaller compared to the right. Her size and fat distribution in her left leg, arm, bottom and labia were smaller than her right side. This condition is called Hemihypertrophy.
The left side of her face, back and chest have extensive Vascular Malformations (birth marks). We always knew she was delayed and had the tendency to use her left arm, seemingly unaware she even had a right side. Then at 17 months old another diagnosis was added to her list. Violet was diagnosed with right hemiplegia cerebral palsy.
We have had to overcome a lot of hurdles with her CP but through her therapies since she was 4 months old, we have seen her recently come along in leaps and bounds.
Violet has also been diagnosed with Epilepsy which she is currently medicated for. This was one condition we were warned Violet may develop as not only is there an increased risk after having brain surgeries but she has another abnormality in her brain that makes her more susceptible to seizures.
After four years of holding Violet down for most of her consults I can’t help but think how much more can I cope seeing her being put through tests, treatments, operations, being poked and prodded, especially when we never seem to be able to get to the bottom of why Violet has so many different medical conditions.
To be told constantly you have a unique and complex child and they want to keep seeing her because of this uniqueness in a search to find answers sure doesn't make you feel special, it just really gets you down.
We have recently started seeing the psychological effects of her eye condition and her vascular malformations that are now coming into play at such a young age! This is due to people’s stares and comments and herself noticing that she is a little different. As a mother this is very hurtful to see.
Her older sister Emily who is now eight has been absolutely fantastic with Violet. She has certainly played an integral part in her development and progress. Emily has even thought of her own therapy ideas to help Violet. I could not imagine a more perfect sister for Violet to have and look up to.
Managing Violet’s many medical conditions certainly is challenging. She will be four in August and as I look at her today and I am completely amazed at how she copes, even if it does mean adapting and learning different ways to do things others do so easily.
Even though she still has her struggles, she is able to walk and talk which we are extremely thankful for considering what her brain scans look like!
I thought I knew all about being a mum after having my first daughter Emily, but having Violet has made me realise I didn’t know as much as I thought. Not just the medical aspects but the way you parent, learn to appreciate life and realise there is much more to it. We are very thankful she is in our lives and she is so very loved by us all.
Another curve ball was thrown to us in April this year, when I was diagnosed with a glioma brain tumour. I had my tumour removed on June 1 of this year and for now have put Violet’s appointments on the backburner until I have myself back to full health. I have gone through the emotional and angry phases of my diagnosis and now find myself feeling more level headed. After all, I need to just take each day as it comes, deal with and overcome this new challenge. With the love and support of my family and friends…we will do our hardest to conquer it.
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