How Lucas Lives Life with the Chronic Bleeding Disorder Severe Haemophilia A

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Lucas has severe Heamophlia A; a happy, healthy, very active AFL obsessed 6 year old boy.

New Year’s Eve 2010, 5pm – A day that will always stand out in my memory. That is when I got the call from a GP to tell me my son had Severe Haemophilia A, <1% clotting Factor VIII level, and if there were any concerns to immediately present Lucas to the ER.

They also told me that staff from the haematology department at our major hospital will be in contact with me soon. I had a thousand questions and the GP couldn’t answer one of them. No words will describe the overwhelming sadness and hurt I felt when I received that news. I hugged my baby boy ever so tight and cried for hours on end, feeling like we had been handed a death sentence.

Living with haemophilia

Living with haemophilia has never been easy. Lucas had surgery for his first portacath at 19-months-old after he experienced his second bleed which was due to him bumping his eyebrow on my bedside table and two days later he woke with a horrid black eye – surgery was fast tracked after that as his veins were so little and hard to infuse – it would take staff between 2-6 attempts before they would successfully access his vein for treatment. Holding down your baby to be poked numerous times, listening to them cry and scream in not only pain but horror, is heart breaking!

 

Lucas’ port was such a relief to have, it gave us independence and freedom, and he started on prophylaxis three times a week which he is still on to this day. Sadly, that port only lasted a year, before he got an infection to the port – assuming from a bleed underneath where bacteria got to and ended up causing the port to pretty much break through his skin and expose itself – that was a horrible nightmare!

 

During that first year my son also developed inhibitors (antibodies that attacked the clotting factor I infused to help his blood clot). The fight against inhibitors involved daily infusions of higher dose factor – so we proceeded with a PICC line in my son’s arm to help with the new treatment frequency. We spent 6 days in hospital to have the PICC line inserted and port removed – 2 separate surgeries over 3 days. A simple PICC line can be done as day surgery but my sons inhibitor levels were so high during this that he had uncontrolled bleeding for 2 hours and a double dose of bypassing clotting product just to get it under control. It was the single most terrifying moment of my life to date.

 

While Lucas had inhibitors he also experienced a joint bleed in his knee which kept him out of action for a week – WOW, try keeping a toddler seated for an hour let alone a week! Luckily we were able to get on top of that bleed quite quickly despite the inhibitors with no damage done to his joint.

 

The following 4 months were more positive and my son won the fight against inhibitors, YAY! I booked him in for a new port and all went well. His PICC line was also able to come out. The rest of that year went quite smooth and with that came the introduction of preschool – nerves galore but very smooth sailing! Fast forward a few years and I have a Happy, Healthy, Very Active and AFL obsessed 6-year-old boy. He still has the same port in, it has served us extremely well and in the last 12 months he has advanced to peripheral access for infusions three times a week.

 

Our journey has been bumpy, and we know it always will be, but these moments are just that …. Moments, and don’t take away from Lucas what he can go on to achieve in life. Luckily with today’s treatment, advanced knowledge and great haematology staff to support both Lucas and I, he has been able to enjoy a ‘normal’ everyday life.

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