Toby Morgan, the son of Wayne and Kelly Morgan, has Spina Bifida.

It doesn’t stop him though as he enjoys going to the Parkes Early Childhood Centre, getting out in the dirt and going on rides.

As part of Spina Bifida Awareness Week, his Mum, Kelly has spoken about his situation.

Toby was born on March 19,  2012, at Westmead Hospital. 

“We found out at my 20 week scan that Toby had Spina Bifida and so ensured we were in Sydney a couple of weeks prior to my due date,” Kelly said.

“Toby spent his first five weeks at Westmead Children’s Hospital where he underwent three major operations, the first being to close the lesion in his back and the other two in relation to insertion of a shunt to manage a condition called hydrocephalus. 

“Toby was home for three weeks before having problems with the shunt and was airlifted to Westmead Children’s for another shunt operation. 

“Things progressed well for more than 12 months until the shunt became blocked, requiring another operation to fix this.”

Kelly explained that Toby’s lesion is at a level that causes issues with his bowel and bladder function as well as his mobility. 

“In terms of his mobility, he wears splints that go to just below his knee and has been walking with a frame since he was two. 

“Although he is able to walk with this, his feet turn dramatically inwards and so he will need full length splints to keep his legs in a forward facing position. 

“We will need to wait another six or so months until his legs are long enough for these.  

“He also wears  “bar and boots” at night to assist his legs to develop in a forward facing position,” Kelly said.

“Serial casting is also required a couple of times a year – this involves him having toe to hip plaster for a couple of weeks at a time. 

“He has started to take some steps without his walker which is very encouraging and we can see how proud he is of this achievement.”

The long term prognosis is that Toby will be able to walk with his walker and possibly without, but may need a wheelchair for longer distances.

Related to the Spina Bifida and hydrocephalus, Toby has Arnold Chiari II malformation which is a brain abnormality that causes the cerebellum, the part of the brain that controls coordination and muscle movement, to protrude into the space normally occupied by the spinal cord. 

These conditions can cause learning difficulties. 

Toby’s assessments to date however, demonstrate that he is progressing very well. 

“He is a little chatterbox, developing very well with his language, counting, colours and general skills and abilities,” Kelly said.

“He also displays a strong sense of independence and determination at a level that is extremely promising for someone with these conditions. 

“He may need assistance with learning, but all children with Spina Bifida vary in this regard.”

The family has spent a great deal of time at Westmead Children’s Hospital for Toby’s operations, check-ups and other treatments over the last two and a half years. 

“We have been very grateful to have the opportunity to stay at Ronald McDonald House, Westmead for these visits, which at times feels like a home away from home,” Kelly said.

“We are well supported by family, in particular Toby’s grandparents. 

“My mum is a retired nurse which is great in having someone in the family able to assist with Toby’s special care needs.” 

Toby attends Parkes Early Childhood Centre three days a week where he has a one-on-one carer. 

“He loves going there and playing with all of the other children,” Kelly said. 

“He has a dedicated carer who, along with all of the staff there, look after him with so much love and caring. 

“They share our joys and tears and are like an extended family for Toby.”

Toby has a four year old sister Kasey who he adores. 

“We live on a farm in Trundle and he loves to get out in the dirt and play with the cat and dogs and go for rides on his dad’s four- wheeler. 

“He is very confident with his walker and now runs with it, kicks balls and when on a slope likes to take a run off and then hold his legs in the air while he rolls down – stuntman! 

“He also loves painting, drawing, reading, watching Peppa Pig, Play School and Wiggles – and knows most of the words to the “Frozen” soundtrack,” Kelly said.

“He is such a happy, sensitive, smart, funny and adorable boy. 

“He is also very affectionate, constantly showering his mum with cuddles and kisses.”

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What is spina bifida?

Spina bifida means split or divided spine. It occurs when a baby’s spinal cord fails to fully develop in the early weeks of pregnancy.

This causes permanent nerve and vertebrae damage.

How does spina bifida affect people?

Spina bifida affects people differently. Some people have paralysis or weakness in the legs, bowel and bladder incontinence, a build-up of spinal fluid on the brain (hydrocephalus) and learning difficulties.

Many people are able to lead full, active and independent lives.

What causes it?

The direct cause of spina bifida is unknown.

The risk of developing spina bifida can be reduced by up to 70 per cent if folate or folic acid is taken at the recommended levels one month before pregnancy and for the first three months of pregnancy.

How common is it?

Around 5,000 people in Australia have spina bifida.

When is it diagnosed?

Ultrasounds and blood tests carried out between 16 and 18 weeks of pregnancy can determine if a baby has spina bifida.

What treatment options are there?

A long narrow tube called a shunt is used to drain excess spinal fluid from the brain of someone with spina bifida.

Orthopaedic and bladder surgery may be required along with self-catheterisation.

Some people with spina bifida use a wheelchair for mobility while others may use walking aids like braces.

Long-term orthopaedic and physiotherapy treatment could also be needed to strengthen weak muscles and prevent joint deformities.

How does Northcott help people with spina bifida?

Northcott’s speech pathologists, occupational therapists, physiotherapists, psychologists, early childhood educators, social workers and nurses provide support and information to help people with spina bifida and their families get the services and resources they need to manage day-to-day life.

The specialist spina bifida adult resource team helps young people moving from paediatric to adult services. The team helps people find appropriate health and community services relevant to their goals and needs.

They work with clinicians and service providers to make sure they understand spina bifida and the unique needs of each person living with this disability.