Date Of Birth: August 16th, 2005

 Illness: Cerebral Palsy, Hydrocephalus, Microphthalmia, Epilepsy 
 

BIOGRAPHY

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 the 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 1 week in 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 1 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.

As she was monitored over the weeks for her Hydrocephalus, her head circumference was still increasing, so they decided to perform her first Operation  when she was 2½ months old and involved what's called an EndoscopicThird Ventriculostomy (ETV). This was to make holes between her ventricles in her brain, so that the excess CSF would hopefully escape to her other side that appeared to be draining already and to insert a Rickham's Reservoir, which is a small silicone device 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 was still building up.

Her 2nd Operation was when she was 5 months old and involved inserting a Ventriculoperitoneal (VP) Shunt, which is an operation performed to place a catheter into her ventricle and drain cerebrospinal fluid (CSF) from the ventricular system into the peritoneal space (abdomen) This catheter is connected to a pressure valve that regulates the amount of fluid drainage.

Her MRI at birth also revealed she had two eye conditions in her left eye. These are PHPV and Microphthalmia. Her eyes started to develop during pregnancy but for some reason stopped. Due to this condition, the eye is underdeveloped and it has caused Violet's left eye to be blind.

Her eye condition is in-operable 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.

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, comments and herself noticing that she is a little different. As a mother this is very hurtful to see.

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 tendancy to use her left arm, seeming unaware she even had a right side. Then at 17 months old another diagnosis was added to her list when she was officially 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 just had leg and foot surgery on 22nd February 2011 to help put her foot in a better position due to her Cerebral Palsy. It will involve a long time for rehabilitation.

She has also been diagnosed with Epilepsy which she is currently medicated for. This was one condition we were warned Violet may develop, not only is there an increased risk after having brain surgeries but because she has another abnormality in her brain that makes her more susceptible to seizures.

Managing Violet’s many medical conditions certainly is challenging. She will be 6 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 realize I didn’t know as much as I thought I did. Not just the medical aspects but the way you parent, learn to appreciate life and realize there is much more to it.

We are very thankful she is in our lives and is so very loved by us all.