Jacqui's motherhood story - Giving my son the best start to life

When I was 17 weeks pregnant with twins, a boy and a girl, the doctors discovered a cyst on my son’s brain. This was monitored very carefully. At 31 weeks, the cyst disappeared. The doctors assured me this was great news and shouldn’t have any effect on my son. But as a parent, you still worry. 

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At 37 weeks I gave birth to my twins via an elective caesarean. It was the most stressful 20 weeks of my life! Shaking, crying and praying everything was going to be ok, I got to hold my babies Domenic and Chiara for the first time.

 

As a mother, you have the most unexplainable bond with your babies and I knew there was something not right. Domenic’s eyes would move from side to side really fast, constantly, whenever his eyes were open, but we all thought he would correct it in time.

 

A few weeks passed and his eyes were not correcting themselves. I noticed he was not responding to toys and people, like his sister. I watched his reaction when I clicked by his eyes, waving my fingers and even shone a torch to get a response. Nothing.

 

My heart just sank and the worst fears came over me.

We took him to the doctor and it was confirmed he was blind, with 2 possible outcomes: a delayed maturation where his vision would develop in time, or he was going to be blind or have low vision. We were sent to Vision Australia for advice and education on what would be our next steps. Over the next few weeks, being diagnosed as legally blind and with floppy muscle syndrome, we worked harder than ever, appointment after appointment,  to give Domenic the best start to life. 
 
At six months of age his sight miraculously improved but we’d discovered two new separate conditions caused by the cyst. Cerebellar Vermain Hypoplasia (CVH) a rare brain disorder wherein a part of the brain fails to develop fully, impeding balance and movement, coordination and speech, and Ocular Motor Apraxia (OMA), a neurological condition affecting controlled eye movement, often accompanied by speech difficulties, coordination, and developmental delays.

Committed to providing the best opportunities for Domenic, we reached out to various organisations that proved extremely beneficial to his growth and development.


The biggest influence was Yooralla, dedicated to helping people with disabilities and special needs and lead a life of independence.

 
Five years on, Domenic is walking, running, jumping and even scooting!

 

This leap in development has stunned his doctors and is largely due to the assistance of these services. From physical exercise, visual and mental stimulation and socialisation skills, Domenic is now thriving in a pre-school environment.

 

Unfortunately he will always have these two conditions, but he has adapted to living with them and we still continue to receive help from Yooralla, Vision Australia and the doctors to monitor his development.

We feel absolutely blessed that we jumped in early and got the help we needed and it paid off. We think the outcome may have been worse if we didn’t. I cannot stress to parents enough, that if there is a doubt in your child’s development, please get them checked out. The earliest intervention is the best thing you could do for your child. 

 

My experience inspired Jacana Kids which I co-founded with my closest friend Ana. Jacana Kids help raise money for charities who support the early childhood development of children with developmental delays. Together we wanted to make a difference and donate 50% of the profits to services that have help children like my son.

ABOUT JACQUI

I love shopping, online shopping and karate. I’m outgoing, love a laugh and work really hard for our cause to make a difference to other families like mine.

 

Hood: Mitcham

 

Children:

 

Motherhood in 5 words: Stressful, Busy, Rewarding, Chaotic and Loving.

 

Fav family friendly place: Britannia Mall Mitcham

 

Coffee order: Soy weak Chai Latte with extra honey.

 

Biz: Jacana Kids

Encouraging kids to draw and design their own products whilst raising money for kids with disabilities and special needs. 

 

jacanakids.com

 

instagram.com/jacanakids

 

facebook.com/jacanakids

 

Disclaimer

The information in this story is a unique and personal reflection of the writer's experience. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. If you think you may be suffering from any medical condition you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website

 

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