Haemophilia A, a life-long bleeding disorder, affects fewer than 1% of the population. For Cape Town single mom Jamie Solomons, raising her son Cayden, who was diagnosed as a baby, means living with constant vigilance. From hospital visits to emotional treatment sessions, she opens up about their daily struggles – and hopes for a normal future.
Cayden was first diagnosed with severe haemophilia A shortly after birth. Haemophilia is a medical condition where the ability of blood to clot is reduced, causing sufferers to bleed severely even from a slight injury.
Solomons shares that raising a child with haemophilia can be very stressful. “As a young, active boy, Cayden is very active and loves to explore. I always feel like I need to wrap him up in bubble wrap because I’m so afraid of him injuring himself.”
What is haemophilia?
According to the South African Haemophilia Foundation, severe haemophilia A, also called factor VIII (8) deficiency or classic haemophilia, occurs in individuals with less than 1% of normal factor VIII clotting activity.
This means that sufferers like Cayden and others with haemophilia A bleed longer than other people. Bleeds can occur internally, into joints and muscles, or externally, from minor cuts, dental procedures or injuries.
Cayden’s uncle also suffers from the hereditary condition, his mother, Jamie Solomons, reveals.
“The quote ‘it takes a village to raise a child’ has never rang more true than in our case. As a single parent, it is very difficult for me, but luckily, I have a lot of family support.
“There are days you will feel so helpless seeing your child injured or admitted into hospital, so it’s always good to have that family support.”
Jamie Solomons
Although no cure exists for haemophilia, doctors can successfully treat the condition using clotting factor replacement therapy. This treatment focuses on replacing the missing protein and preventing complications and involves giving or replacing the clotting factors that are too low or missing.
“Starting with the factor [treatment] was hectic and emotional for me because he has very difficult veins, so he gets pricked more than once. Seeing my child cry in pain always breaks my heart, but I know it’s something he needs,” says Solomon.
Tips for parents in the same boat
Solomon says that Cayden is a well-adjusted, intellectual, happy boy and he knows a lot about his condition and is very vocal about it. Her wish for Cayden is that he succeeds in everything he does and that he gets to live as normal a life as possible.
She shares these tips with parents raising children with haemophilia.
“Getting treatment as soon as possible is important to help reduce the risk of damage to joints, muscles and other body parts. If you suspect your child is injured, take them to hospital. I’ve personally been there many times, and 30% of the time it wasn’t an injury, but I always say ‘rather safe than sorry’.”
Professor Alan Davidson, head of the blood and cancer service at Red Cross War Memorial Children’s Hospital in Cape Town, strongly agrees. He shared more insights on the blood disease.
“There are two main types of haemophilia – haemophilia A is four times more common than haemophilia B. Of those, more than half of people with haemophilia A have the severe form,” explains Davidson.
Haemophilia B, colloquially known as Christmas disease, happens due to a lack of clotting factor IX. Haemophilia B occurs in around 1 in every 25 000 males born worldwide.
Men are most at risk
Davidson says that haemophilia affects all races and ethnic groups but occurs almost exclusively in males due to the hereditary nature of the condition. He adds that although haemophilia is hereditary and can be tested for, there are some symptoms to look out for:
- Unexplained and excessive bleeding from cuts or injuries or after surgery or dental work.
- Many large or deep bruises.
- Unusual bleeding after vaccinations.
- Pain, swelling or tightness in your joints.
- Blood in the urine or stool.
- Nosebleeds without a known cause.
- In infants, unexplained irritability can also be an indication.
ALSO READ: Early detection a lifesaver for childhood blood cancer
Get the Health For Mzansi newsletter: Your bi-weekly dose of kasi health, wellness and self-care inspiration.
