"The next five minutes felt like an eternity."

By VANESSA HOFFMANN

In December 2007 I resigned from my job with the hope of falling pregnant the next year. Much to my surprise and delight, a week after leaving my job I found out I was pregnant. I had been taking pregnancy multivitamins for the previous six months because friends told me it was important to “store up” folate in your body prior to falling pregnant. At the time, I had no idea how unintentionally misinformed that information was.

At my 18-week ultrasound in April 2008 our lives changed forever. We had the scan at a local ultrasound clinic and were so very excited to see our baby Jessica, for the first time! Having never had a developmental ultrasound before, we didn’t know standard procedures and just went with the flow. Our first sonographer didn’t say much to us and said he hadn’t been in the job that long. He went out of the room to get a second opinion, which at the time, we thought nothing of. By the time the third sonographer came to check the scan however, I was starting to get nervous.

Without any explanation they said they needed a doctor to check the scan for us. The doctor came in, looked closely at the ultrasound, then said to me, “When do you see your GP next?” My appointment wasn’t for another two weeks, but the doctor quickly and strongly told me I would need to see her that same day. “I will go call her. Stay here and I’ll be back,” the doctor said.

With that, all three sonographers standing in the room left the room quickly behind the doctor. Josh and I were left in a dimly lit room by ourselves, not having a clue what just transpired.

The next five minutes felt like an eternity. We were then advised that my GP was expecting our arrival once the scans were ready. So, we waited for a painstaking 30 minutes for the scans. We sat in that waiting room completely numb, not knowing what was wrong or what to think, or even what to pray.

Once the report was ready, without opening it, we drove straight to our GP. She took us immediately into her office and proceeded to read the scan report filled with medical terms I had never heard of. I asked her, “What does all that mean?”

She said, “Your child has spina bifida.” There was a long pause as tears started rolling down my face. “I am not qualified to talk through with you about this condition so it is important you go see your obstetrician. He may know more.” our doctor said.

So that day we went from the sonographer’s, to our GP and then to my obstetrician. All three of them did not assume to know the details of this diagnosis and how it would play out, but thankfully, they pointed us to the right medical professionals for the next step in the process.

Two days later we a saw a compassionate professor from Royal North Shore Hospital who confirmed the diagnosis and put us in touch with the leading spina bifida specialist at the time, Dr Carolyn West, Head of the Spina Bifida Unit at The Children’s Hospital at Westmead. This was the beginning of our real journey!

Four days after our ultrasound, we had an appointment with Dr West. I had been given some amazing advice to write down all my questions before going to see her. This was the best thing I could have done to help me get the answers we needed. Dr West was absolutely amazing. She sat in a room with us for three and a half hours answering every question we had on anything and everything. She outlined the likely prognosis for Jessica and nothing was sugar coated. Dr West gave us great hope in how people who have spina bifida have the potential to live quite an independent life and, on the whole, these kids have a nice temperament and are pleasant to know.

Dr West’s love for children with spina bifida was evident and her excellent knowledge of the condition, after 30 years of research and specialist care, was exceptional. With renewed hope in a very devastating situation, we went home, exhausted but thankful we received accurate information.

My husband and I have spent the past five years on an emotional, sad, amazing, hard, rewarding and hopeful journey. Jessica is now a beautiful five-year-old girl who is a high-level paraplegic, has hydrocephalus, epilepsy and is preparing to start mainstream school next year in a support unit. As many people would agree, Jessica is a light to this world and blesses everyone she meets. Jessica would be excited to tell you she has a healthy little 20-month-old sister Jennifer, who she loves to pieces.

This sometimes overwhelming journey has helped make Josh and me who we are today. It has helped us connect with others we wouldn’t have otherwise met and blessed us with such a bubbly, precious, happy little girl who loves life and people.

In the years since, I have discovered our diagnosis journey was unique in its positive response and connections. I have heard very sad stories from other families who were given a spina bifida diagnosis that involved being told their child would be brain damaged, have no quality of life or even die. For the most part, this information is completely inaccurate and leads to families enduring more unnecessary trauma.

It is vital that parents receive prenatal counselling by specialists qualified to talk about spina bifida so informed decisions can be made. It is also important to educate the community about what spina bifida is, how you can help reduce the risk by taking high-dose five milligram folate supplements and how valuable individuals living with spina bifida are.

As disability inclusion becomes a bigger part of our school and communities, let’s all see what we can do to bring awareness and education to disabilities like spina bifida, so prevention can be actioned and inclusion further embraced.

Vanessa Hoffmann is a full time carer of her two daughters and former personal assistant from Castle Hill in NSW. She is committed to spreading the disability awareness message and building an inclusive society. She hopes to one day establish her own charity that advocates for, and assists, people with disabilities.

Northcott is a not-for-profit disability service provider supporting more than 11,400 people with disabilities, their families and carers in NSW and the ACT.  Northcott receives some government funding, however relies on the generosity of the community to continue to deliver the quality, innovative services that people rely on.

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