In September, 2015, our son was diagnosed with Haemophilia A Severe, with <1% clotting factor. At the time, he was still a baby and only nine months old.
We didnt even know there was such a thing as a bleeding disorder until that day the Haemophilia Treatment Centre (HTC) staff at our local children’s hospital 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 wasnt so hysterical.
That day, we learnt our son’s rare blood disorder meant he is missing the factor (factor eight) that makes his blood clot when he has a cut or bruise.
Coming to terms with our child’s 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 and falling apart when they did. 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 was 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, hence why I started my Haemophilia blog for parents.
We have found, over time, this disorder to be very manageable for our family. Which is a total blessing because I’m familiar with other children whose condition results in significant impairment from everyday life. We are immensely grateful that our boy has been managing well.
Due to the first-class management and treatment of our son 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 conducted an interview with our son when he was first diagnosed at two years of age, asking him directly for comment, he would blabber something about not even noticing he had a disorder (in his own words, combined with lots of bum shaking and drooling). Growing up, his life has been somewhat comparable to any other ‘normal’ boy.
We often forget about his condition until someone asks how h’es going and we realise he’s growing so fast without minimal 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.
The lab had spoken and on-mission for Operation Baking of Baby #2, there was a risk of another Haemophilia child I had baked a boy.
Upon conceiving, there is a 50/50 chance of the boy having Haemophilia and a 100% chance of him being delicious.
If we had 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.
After tipping into the second trimester with baby #2 and finding out ‘it’ was a ‘she’, we were elated to know we didn’t have to go through the Haemophilia rigmarole again. Phew!
Since I was also a Haemophiliac, my Haemotologist (lovely lady, I might add) worked with the obstetric team in developing a birthing plan appropriate for potential mother and baby with Haemophilia.
As we had no knowledge whatsoever of our first born’s 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! Second time ’round I had all my 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 were in good hands!
Oh and the following year, I finally gave birth to a healthy baby girl, our Whopper with Cheese.
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 your HTC staff, the Haemophilia Foundation and get a support network around you.
Over time, you will come to trust the knowledge and expertise of our doctors and nurses whilst having the challenging yet rewarding privilege of helping a Haemophilia child to live an abundant life without limits.
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
