will's story
Will’s journey began on October 21, 2006.
Will suffered Hypoxic Ischemic Encephalopathy (reduced oxygen and blood flow to the brain) during or soon before birth. Approx two out of every 1,000 babies born suffer from HIE. In Will’s case, it resulted in his primary diagnosis of moderate to severe Cerebral Palsy followed by a secondary diagnosis of acquired Microcephaly (small brain, small head) and development delays.
What comes naturally for other children like rolling, sitting, crawling, standing, walking and eating, Will has to work very hard at. To develop skills and prevent muscular and cognitive degeneration Will requires lots of help. Most children that do not have cerebral palsy will eventually reach developmental milestones on their own. For the most part, Will cannot. He needs to be taught and this requires on-going, daily effort. Despite the challenges that Will has been confronted with in his very short life, he has the biggest smile and most contagious belly laugh you have ever heard!
There is a great deal of equipment as well as treatment options available to help, which Will has received, however they are all very expensive. As his parents, it is our quest to give Will the greatest possible chance of leading a normal life through raising awareness about his brain injury, its consequences and to also raise funds for his ongoing treatment. Treatment now is so important while he is young and his brain has the ability to heal through neuroplasticity (the brain’s natural ability to form new connections in order to compensate for injury).
What is Hypoxic Ischemic Encephalopathy (HIE) ?
HIE is a term for brain injury caused by a combination of a lack of blood flow and decreased oxygen to the brain. Approx two of every 1,000 babies born are diagnosed with HIE. There are 3 grades of severity, 1 being mild and 3 being severe. Will suffered a widespread, Grade 2 injury coupled with severe seizures. HIE is potentially life threatening and often, as in Will’s case, prognosis is bleak.
What is Cerebral Palsy (CP)
In Australia, it is estimated that a child with cerebral palsy is born every 18 hours. Cerebral palsy (CP) is a permanent physical condition that affects movement. Its effect can be as mild as just a weakness in one hand ranging to almost complete lack of movement. A lack of oxygen to the brain or stroke are the typical causes. There is no known cure and no pre-birth test. Depending on what areas of the brain have been damaged will determine if the disability is only physical or a combination of physical and intellectual. There are several types of Cerebral Palsy and no two people are affected the same. In Wills case, he has a mixed type of Cerebral Palsy which affects an estimated 5-10% of people with CP, primarily affecting his balance, co-ordination and muscle tone, which results in him fluctuating between being floppy and stiff but never permanently either.
What is acquired Microcephaly?
The term microcephaly literally means small head. Acquired microcephaly may result when a severe insult, such as HIE, impairs the growth of a normally developing brain following birth. 50% of babies that suffer from HIE will be diagnosed with acquired microcephaly. In Will’s case, his acquired microcephaly will almost certainly result in him having an intellectual disability but to what degree will remain unknown until he is much older.
So, what does this mean now for Will?
Will is now 16 months old. He can sit unsupported for short periods of time, has recently started to roll and can stand with support. He can’t however chew or swallow solid food, push up on his arms, point at objects, crawl or talk and will need to work hard to acquire these skills.
Despite the challenges that Will has been confronted with in his very short life, he is one of the happiest children I know. His smile is as bright as ever and he's the luckiest little man alive to have a big brother as wonderful as Joel, who he will no doubt learn so much from. He loves to be around others, loves to play peek-a boo, loves to play with Joel, loves cuddles and most of all just loves life.
This is Will’s story
When Will was born into the loving surrounds of our home, he looked perfect in every way. It was a miracle to have another baby as both our children were a result of a journey through IVF. My husband and I now had another son and a younger brother for our eldest son, Joel. However, when Will wasn’t moving, didn’t cry and was barely breathing, alarm bells rang. We had no idea just how profoundly our lives were about to change.
Shortly after birth, Will started having seizures. His seizures were severe and needed to be controlled immediately as they potentially could have had catastrophic effects to his brain. He was immediately loaded with anticonvulsant medication and for the next 7 days our beautiful baby boy remained in a semi unconscious state momentarily opening his eyes a couple of times. If not for all the wires and monitors you would think he was just sleeping peacefully. Sadly, his EEG results revealed that he had little brain activity.
When planning for another baby, we just assumed that my pregnancy and newborn child would be just like the one before. Seeing Will in such a condition was devastating and feeling so helpless made it all the more harder to cope with. At this point, my husband and I thought that Will would recover, wake up, our expectations would be met and our life would carry on as before. We could take our baby home and life would be perfect. After all, the only other babies in intensive care were sick and premature and compared to Will’s healthy 4.5kg’s it just made sense that he would get better.
When Will was 3 days old he had an MRI to determine exactly what was happening in his brain. I can remember kissing his sleeping face goodbye as he went for the scan and thinking “Everything will be OK” but a pang deep inside me was preparing for the worst and as fate would have it, that pang was right and our darkest hour as parents were about to come. The MRI revealed that Will had suffered an insult to his brain known as Hypoxic Ischemic Encephalopathy or HIE.
I was told that Will would have moderate to severe cerebral palsy, may never walk, talk and would possibly need to be tube fed. The neurologist added that it was our job to love Will and that was all we could do for him.
I felt numb. I just couldn’t believe what I was hearing and that this had happened to our baby. When you learn that all is not well with your child and the once perfect expectation is taken from you, feelings of disappointment, guilt, anger, blame, confusion and hurt flood your mind. Whilst still trying to process my own emotions I decided that I had to do something, anything to offer Will a chance.
As I started to digest and process Will’s diagnosis in my mind, I decided that I would not accept that this was going to be his lot in life. I would not accept that all I could do for Will was love him. Sure, loving him was the easy part but there had to be so much more. I could accept his diagnosis but not his prognosis. I lived with no Illusion that Will would recover and become a child without a brain injury however despite his dire diagnosis, I knew that there was more for Will. It was up to me to be as proactive as possible to find ways to help Will reach his potential and be determined to give Will every chance of leading a normal life.
I had to believe that what happened to Will could not happen for no good reason. I strongly believed that every heartache, every failure and every challenge would carry with it an opportunity of equivalent benefit. I just had to work out what that was and drag myself up out of the haze of grief that I was in to find it.
It was around this time that I was told about Hyperbaric Oxygen Therapy. I had no idea what this was and that it was an alternative therapy that could potentially help children with brain injury.
What is Hyperbaric Oxygen Therapy (also known as HBOT)
Oxygen to the brain is what rain is to the desert – it creates an oasis of life.
HBOT safely delivers 100% Oxygen to the brain and spinal cord structures while inside a pressurized chamber, acting as a catalyst promoting neurovascular repair. Hyperbaric oxygen therapy is not a miracle cure for children with cerebral palsy however is a way of ensuring the most complete recovery possible.
Will was 7 weeks old when he received his first 4 hour treatment and to date has received 180 hours of treatment. The most obvious improvements that we noticed have been an increase in alertness and responsiveness. no seizures, and the disappearance of spasticity (muscle tightness) in his left arm. This just does not happen with cerebral palsy so it is nothing short of a miracle. Overall his development has far exceeded the expectations of his doctors and both Will’s neurologist and pediatrician support that his brain injury should have manifested itself physically in a much more severe way. They are constantly surprised by his progress.
Late last year I also began to research Stem Cell Therapy. There are facilities worldwide that offer treatment however some of these facilities were questionable, especially the source of the stem cells. There is a stigma of controversy surrounding stem cell treatment however this is in relation to the use of embryonic and fetal stem cells.
The Zhejiangxioshan Hospital in China was offering donated umbilical cord stem cells and their reputation to date gave me the confidence to enquire further until my husband and I decided that we had to take the leap of faith and take Will to China.
Stem Cell Treatment
A baby’s umbilical cord, once considered medical waste is a rich source of stem cells. Cells considered as the body’s master cells. These are the basic building blocks of the human body able to transform into blood, organs, tissue, and components of the immune system. When injected, stem cells potentially migrate to the site of injury attracted by specific chemicals released by the damaged tissue. The cells can reactivate stunned portions of the brain that have yet to die off secondary to the injury. This is why it is so crucial to offer Will this treatment while he is so young.
They may also activate dormant stem cells within the body as well as create new Neuro pathways around the area of injury. They will in a sense allow Will to better and more fully use what he has left by increasing the white matter within the remaining tissue. Within 4 weeks of receiving between 40-50 million stem cells, Wills balance, co-ordination, overall awareness and circulation have greatly improved. We hope to see further progress over the coming months.
Both HBOT and Stem Cell treatment both play an essential role in optimum growth, development and achievements. Yes, Will’s brain is still small due to his injury and the reality is that won’t change much . Its growth will always be below average. However, the aim of these treatments are to optimise the functionality of the brain that he does have and take advantage of neuroplasticity - the brain’s natural ability to form new connections in order to compensate for injury.
Will is by no means physically and cognitively like his peers however his achievements are huge to us and are a cause for celebration. He has proven to us that it is possible for him to more than we were told he would be. He shows tremendous hope that he will continue to make improvements, defy the odds and I hope to be able to give him every possible opportunity during this crucial growth period in his life.
Will is going to need ongoing HBOT and Stem Cell treatment to help his brain reach its potential as well as speech, occupational and physiotherapy to treat his physical needs. My husband and I are practically optimistic and if we felt that these treatments were not improving the quality of life for our son we would not be investing money into them. We have the support from his pediatrician and physiotherapist who both agree, they don’t have the answers either but realise that Will’s improvements have been amazing.
We ask that people at the very least can open their minds to the benefits of alternative therapies without always needing to understand precisely how they work. I know that I don’t need to know the science to explain why my son is achieving what he is achieving. I just know that he is and that is all that matters.
Each brain injury is unique as is the person who is injured. Will’s official prognosis is now just a set of labels and names to us. They do not define Will and no-one can predict Will’s final outcome and just how far he will go in his recovery. Will is very atypical and living proof that anything is possible. He’s had an incredibly positive impact and influence on so many people during his very young life. We hope that his story of hope can impact on you too.
For more information about Will or his treatment options, please contact Nicole Patterson (Will’s mum) on 0416 214 975 or nicole@perfectspirit.com.au.
