Mater Mothers' spina bifida warriors

There are some 5000 adults living with spina bifida in Australia and around 150 babies born with the condition every year. Spina Bifida is a condition where the lower part of a baby’s spine is open and it affects 1 in 2000 pregnancies in Australia. Families often discover the diagnosis of spina bifida at their 18 to 20 week ultrasound scan. Today on World Spina Bifida and Hydrocephalus day we’re proud to share the smiling faces of some of Mater’s littlest spina bifida patients. 

Watch the Australian Story episode Baby Steps to find out about baby Harvey's progress following in-utero surgery for spina bifida at Mater Mothers. 

Logan

“Logan turns two today! He can independently crawl, pull to stand, and has just started taking a few independent steps! He loves to walk, run and kick a soccer ball with the aid from his walker. He is always so excited to ride his trike, loves going to his swimming lessons each week, and is obsessed with the Wiggles and Peppa Pig. He absolutely adores his big sister Lara, and has all of the family wrapped around his little finger. Most of all, he makes people smile... all the time. He is an absolute delight, and we couldn’t imagine our lives without him! Things aren’t always easy. Logan had post-natal closure in the first 24 hours of life, as in-utero surgery wasn't going to be a good fit, and he had shunt inserted for his hydrocephalus at 17 days old. There are extra appointments and sometimes things that aren’t quite on track, but we have so much support from our specialists, family and friends. Spina Bifida doesn’t define Logan, it’s only a small part of who he is. He is our spina bifida warrior.” 

Moana Rose

“Moana-Rose is now 14 weeks and is doing really well.  Aside from lots of medical appointments and check-ups, she is doing lots of regular baby things: feeding all of the time, sleeping sometimes and lots of great big smiles.  

She rolled on over yesterday and has really strong legs with good movement all the way to her toes.  She has remained shunt-free which is fantastic. 

Moana-Rose is a beautiful, happy wee girl. I feel so grateful for the opportunity for fetal surgery at 24 weeks gestation.  I absolutely believe it has been life changing for the both of us.  I would like to thank Mater Mothers' Hospital, the Maternal Fetal Medicine team and all the many other fantastic people that have helped her on her journey so far.”

Hannah

“Hannah is ten months old and sitting independently for a few seconds! And almost rolling. Hannah had in-utero surgery for Spina Bifida repair. We would like people to be aware that in-utero surgery is an option, and this can greatly improve their functional abilities.”

Benjamin

“This is Benjamin who is 19 months old. He has spina bifida myelomeningocele from L3 and hydrocephalus. He was the first kiwi to have fetal surgery at 24 weeks gestation at Mater Mothers. He is a bubbly, cuddly and cheeky little bubba who loves crawling everywhere and pulling himself to standing on whatever he can find. He absolutely loves the Wiggles and dancing. He loves talking too. He surprises us every day with what he does and his cuteness. He is our little spina bifida warrior!”

Read more about Benjamin’s spina bifida journey

Julian

“Julian is now 17 months old and thriving. He is crawling so well it’s hard to keep up with him and has just started standing up. Julian’s favourite things are planes, cars, trucks, swimming, puppy dogs, playing with friends and food. It has been a crazy and amazing  journey but one I would not change for the world, this little man is our little ray of sunshine ☀”

Read more about Julian's journey: Miracle baby Julian turns one

Harvey

Harvey is doing exceptionally well! He turned two on 31st October and is meeting all of his physical and cognitive milestones. We can't quite believe how well he is doing and we are so grateful to Glenn Gardener and the team at the Mater for all of their wonderful care. 

 

 

 

 

What is in-utero surgery for spina bifida?

A new surgical option has brought a new option to Australian families facing the diagnosis of spina bifida: open fetal spinal surgery. Mater Neurosurgeon Dr Martin Wood and Director of Maternal Fetal Medicine Dr Glenn Gardener are two hands of this surgery, amongst a huge multidisciplinary team. They tell us about the surgery and bringing the option to Australian families.

Bringing open fetal surgery for spina bifida to Australian families.

Mater undertakes Australian first in-utero surgery