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I am a carrier and so are my 4 Children #Haemophilia by Hayley Kassen

I am Hayley Kassen and I am a carrier. I gave this gene or is it chromosome to all of my kids, Monique 29 years old, Tasmin 24 years old and Lourenco 22 years old. My parents have 6 kids, 3 boys and 3 girls and there is no history of Haemophilia in my family.

How about that……  So my son is a severe #Haemophilia A with inhibitors. He has been having bleeds from the age of 3 months that is how I found out that he is #Haemophiliac. He was getting his 3 month immunisation and his whole arm swollen up, and he was crying nonstop. At the hospital I was really interrogated until one doctor did the test. I was told it’s a spontaneous mutation and that is why I was shocked when my grandson started showing symptoms.

Lourenco had many bleeds, many sleepless nights and a lot of pain for a boy that was a lot to carry. When he was 4 years old he woke up and he started vomiting blood.  I rushed him to hospital and they administered factor 8, but the blood became clots and he was weak until they checked the results of his last check-up. That’s when they realised he has developed inhibitors. They rushed him to theatre and started to operate without him having any factor.

The operation was a success, he had a bleeding ulcer. He was then sent to ICU and the blood was oozing and he was losing blood fast. He was given #Novoseven, I remember. He was at deaths door a few times in that period. Luckily the bleeding stopped and he was not allowed to eat solids for about 2 months that was difficult for a boy to understand.  He had terrible joint bleeds mostly his right knee, target areas they call it. Unbearable pain with joint bleeds, at times I wished he could transfer the pain to me. He was on #Feiba from then onwards.

When he was 14 years old, on the day were attending a Christmas party that the #CHOC Foundation does on a yearly basis. The morning he said to me “I don’t want to go this year “ and I decided if he doesn’t want to go, we won’t go. My dad called and they decided to go, I remember getting him in the passage dressed to go, and he gave me a kiss, and he left with my mom and dad. I met up with them at the Christmas party and he came to me and said “you always tell me if you don’t want to go somewhere, you should not go, because something may happen”. 

I just laughed. I left with my daughters and Lourenco went with my dad and mom, they visited my sister. When I got home I got a call from my brother in law, telling me Lourenco was in an accident. I asked if he is ok, but he just put the phone done, I rushed to my sister house, and was told my dad rushed him to hospital. I got to the hospital and Lourenco had an accident with a Quid bike. He is being looked at… He cracked his skull and broke his knee in many places. He was in emergency and there was no urgency as they did not see it at critical.

I tried to tell them he need to get immediate attention , with the delay he started having a brain swelling, the focus was on his knee and not on his head bleed, and also the delay of him being treated immediately CAUSED the brain swelling. He had an operation on his knee the morning, screws was put in his knee.  The same day at about 05h00pm he went in to cardiac arrest, his brain was swelling and he needed to be operated. They rushed him to theatre again and a portion of his skull was removed because of his brain swelling.  He was in ICU for a month and he survived.

Our story was in the Personal Finance because of the high cost of the Hospital bill. Low-cost option foots most of R6m hospital bill | IOL Personal Finance

Currently Lourenco is on a trail run with Professor Johny Mahlangu at the Heamothology Clinic at Charlette Maxexe Hospital – South Africa.

 My eldest daughter carry the gene (chromosome) and gave this to her son, my grandson Jordan, he is 4 years old. That is when I knew I was a carrier as I was never tested.  This is Jordan busy icing a bleed.

My youngest daughter had a baby boy in 2017 and I thought this time around, he would escape the fate. When he started showing symptoms, she was in denial. She took him to a hospital that told her that he displaced his elbow but I told her not allow the doctors to handle him roughly, until we get the test results back. The results came back that 1 month old (At that time) Caden has haemophilia.

I remember feeling so so sad, but when I told her she handled it well and that soothe me a bit. Caden is 11 months old now.  

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