ashton's story
Ashtons’ journey started on the 4th August 2006 at a very healthy 4.4kg.
He cried as soon as he took his first breath but quickly settled in for a cuddle with his mum and that is where he stayed for his first few hours. His dad was delighted to have another son, Ashton has an older brother Samuel. He helped the midwife weigh and measure Ashton and then gave him his first bath.
From the 20 week in-utero ultrasound Ashtons’ parents knew there was a blockage or narrowing in his ureta causing his kidney to dilate, once he was born he had a couple of ultrasounds but was sent to the Childrens’ Hospital for more intricate testing.
It was confirmed that he had a narrowing in the junction of his ureta and kidney pelvis that would require surgery, unfortunately the tests did not show that he also had a ‘rocking kidney’ a more mysterious and painful condition. Two weeks before his first birthday and after 8 surgeries in 8 months his ureta and kidney were finally healthy and functioning without pain. HOORAY!
It was apparent to Ashtons’ mum that his kidney troubles may not be his biggest challenge.
From birth Angela had always been concerned that his weight, length and general size was disproportionate to his head measurement. At 6 months old Ashton was diagnosed with Microcephaly (small brain and small head).
What is Microcephaly?
Microcephaly is a rare condition in which the circumference of an infant or child’s head is smaller than normal. A child’s head is considered abnormally small if it is two standard deviations from the median (average) size for their age and gender. In some cases, the forehead is narrow and sloping and the back part of the head is flat.
Microcephaly may occur as an isolated defect or as part of a more complex syndrome. It can also be acquired through Traumatic Brain Injury (TBI). Diagnosis can be made through head measurements, X-rays, and ultrasound.
How Many Children Are Affected by Microcephaly?
Isolated microcephaly that is not part of a more complex syndrome is very rare, about 1 in 250,000 births.
Given those statistics it’s another reason why it is easy to see Ashton as extraordinary. Ashton has Microcephaly in isolation. Ashtons’ microcephaly to date has no explanation but genetic testing is continuing.
Treatment
There is no medication, surgery or traditional treatment for Microcephaly. When Ashton was diagnosed his parents were informed by his neurologist ‘take him home and love him, it’s all you can do’.
Ashtons’ main symptoms are developmental delays in movement, speech, immature body functions which cause chronic constipation and swallowing/feeding issues. To date he has not developed brain seizures and his family hopes it remains this way.
Ashton has received 100 hours of hyperbaric oxygen therapy (HBOT) as well as daily physiotherapy, speech therapy and occupational therapy mostly administered by his mum.
HBOT has bought about the biggest and fasted improvements in Ashtons' development.
Treatment Goals and Costs
Achieve 150 hours of HBOT before the end of 2008 $7500
Attend umbilical cord stem cell treatment in China, 50 million stem cells via 4 spinal cord injections approx AUD$25000
Continue Advanced Biomechanical Rehabilitation (ABR) $2000 for 4 months
Milestones and Achievements
12 months
Rolls over and over and over!
Can now eat most foods with reduced vomiting and gagging
Reaches for toys with purpose
Weight bearing and weight shifting
Increased strength to hold head up
Sits with support
Sings and babbles
18 months
Starts feeding self with spoon/fork
Searching for toys
Wriggling across the floor
Looking intricately and quizzically at how things work
Communicating frustrations and needs
Loves to stand and tries to take steps when supported
Sits well with minimal or no support while playing with toys
Sings and makes ga and ma sounds
Makes jokes, is cheeky and very socially aware
Loves to play peek-a-boo
Has an awesome laugh and chuckle!
