On the 17th September, 2015, our son Elias was diagnosed with Haemophilia. At the time, he was still a baby and only nine months old. We didn’t even know there was such a thing as a bleeding disorder until that day the Haemophilia Treatment Centre (HTC) staff terrified us with their textbook medical talk. In simple terms, they told us we got a bleeder as I made a mental note of the words “incurable” and “lifelong”, which I would have to get clarification on at a time when I wasn’t so hysterical. That day, we learnt that Elias has a rare blood disorder where he is missing the ‘factor’ that makes his blood clot when he has a cut or bruise.

 

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Our happy little guy has been diagnosed with Haemophilia. It is a rare blood disorder that effects about 3000 Aussies. It is lifelong and there is no cure, but we have access to the BEST medical care in the world so he will still live a long and happy normal life. Praise God, it could've been so much worse!! (the panic that hits you when 5 doctors call you into a room and say "we need to talk") Elias is fearfully and wonderfully made, God knew everything about him before he entered this world, and has an incredible plan for his life. When I was walking the hallways of the hospital awaiting the "news" I felt God say in my heart "perfect peace that surpasses understanding" so we will put our brave faces on and do everything we can to make life as abundant and great for our meatball. Thanks everyone for your prayer and support, he is doing fine and we are grateful to be part of a kind and compassionate church family. ❤️💜💛💚💙 PS. They gave us this cool Haemophilia Association teddy at the hospital 🐻

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Coming to terms with Elias’ blood disorder as well as managing and preventing any slips, trips and falls became my next mission. I was on high alert 24/7, waiting to see what accidents would happen. Understanding how this disorder would play out meant a tough year lay ahead for our family. There were many trips to our HTC that year, which is conveniently located only 10 minutes away (including the drive through Maccas that was required for sustenance). The first year was definitely the most challenging, as it would be for any parent managing a health condition. However, we have found over time his disorder to be very manageable.

 

Parents: don't worry - Haemophilia is very manageable!

Parents: don’t worry – Haemophilia is very manageable!

 

Due to the first-class management and treatment of Elias at our local HTC coupled with the ongoing support and information we received from the Haemophilia Foundation Australia (HFA) and HFNSW, the condition has never been more than a slight inconvenience to us. If I could sit Elias down and ask him directly for comment (he’s two), he would blabber something about not even noticing he had a disorder, because his life is comparable to any other toddler boy. We often forget about it until someone asks how he’s going and we realise he’s growing so fast without any hindrance to his social or physical development.

Recently, I found out through genetic testing that I am a carrier of the gene. In general chit-chat, our HTC doctor told me the genetic test results came in and I’m the genetic link. Surprise! Actually, I didn’t feel surprised, worried or upset at all. Many women upon finding out they are a carrier can feel guilty, overwhelmed, angry and a mix of negative emotions. Really, there’s no right or wrong way to react, as everyone is different. Today, the medical field have an abundance of knowledge about Haemophilia, with more research carried out each year.

So now that the lab has spoken and following several weeks of family planning, we have our mission set to Operation Baking of Baby, knowing that if we bake a boy, there is a 50/50 chance of him having Haemophilia and a 100% chance of him being delicious. If we have a girl, there is a 50/50 chance that she will be a carrier and may also have mild Haemophilia. There is an equally high probability of deliciousness too.

 

 

I am currently tipping into my second trimester with baby #2, and in a few weeks, we will find out the gender. The place of birth will be at our local public hospital in Westmead, where our HTC will work with the obstetric team in developing a birthing plan appropriate for a baby with Haemophilia. As we had no knowledge whatsoever of Elias’ condition at the time of his birth, forceps were used during delivery. We were lucky there was not a subsequent head bleed, and in general he was a healthy baby! This time round we have all our enforcement’s in place (pretty much an army) to help plan and recommend safe birthing methods, as well as supply copious amounts of factor and support. We’re in good hands!

For those parents who have received the news of a Haemophilia diagnosis for their son, relative or loved one, I encourage you to get as acquainted with the HTC staff, the Haemophilia Foundation and support network as much as possible. Over time, you will come to trust their knowledge and expertise, whilst having the challenging yet rewarding privilege of helping a child to live an abundant life without limits.

 

Each year the Haemophilia Foundation of NSW holds a Haemophilia Family Camp for its members, where families connect with other people living with bleeding disorders. It is run by Tony Wilkinson, who does a fantastic job in running this program to help children and those affected gain self-confidence, form new friendships and develop resilience. There are also educational sessions lead by HTC health professionals and youth mentors. Can you spot our family in this pic?

Each year the Haemophilia Foundation of NSW holds a Haemophilia Family Camp for its members, where families connect with other people living with bleeding disorders. It is run by Tony Wilkinson, who does a fantastic job in running this program to help children and those affected gain self-confidence, form new friendships and develop resilience. There are also educational sessions lead by HTC health professionals and youth mentors. Can you spot our family in this pic?

 

Haemophilia Foundation Australia www.haemophilia.org.au

Haemophilia Foundation NSW www.hfnsw.org.au

Haemophilia Families Australia Facebook Group www.facebook.com/groups/393570614180628

Aussie Bleeders Facebook Group www.facebook.com/groups/1494521970809157

 

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