WHAT IS ANTIPHOSPHOLIPID SYNDROME?

You have antiphospholipid syndrome if your body mistakenly makes antibodies that make your blood much more likely to clot.

It doesn’t seem to run in families and is most usually diagnosed in adults, when they have strokes, pregnancy loss, deep-vein thrombosis and other events that make doctors look for a cause. According to the UK’s NHS: “Antiphospholipid syndrome occurs when your body's immune system makes antibodies that attack phospholipids, a type of fat found in living cells.” Children only very rarely present symptoms, so it is very hard to know how common the disorder is in children, but it’s very rare.

Doctors do not know yet what causes antiphospholipid syndrome, and there is no known cure yet. “A widely accepted explanation is that it is caused by a combination of gene mutations (making one more susceptible to APS) and an environmental exposure (such as to a virus),” says the NHS.

Children like Blaine are treated with blood-thinning medication (Warfarin) or low molecular weight heparin (clexane) and aspirin (Disprin).

Children are not normally given aspirin for fear of Reye’s syndrome that causes swelling in the liver and brain, but Blaine is an exception.

“In susceptible children antiphospholipid syndrome can sometimes be triggered by infections, and in some of these cases the condition is temporary, which is good news. ”Antiphospholipid syndrome can sometimes be associated with other conditions such as lupus (or SLE),” says Dr Chris Scott, who is a paediatric rheumatologist, and one of only a few in the country, at the Red Cross War Memorial Children’s Hospital in Cape Town.

Children with APS can receive inactivated vaccinations. These vaccines consist of virus particles, bacteria or other pathogens that have been grown in culture and then lose disease-producing capacity, according to information supplied by the US’ Hospital for Special Surgery website.

But, they advise, “Consult a paediatric rheumatologist before administering vaccines to your child. Children with APS who are treated with blood thinners only may receive the standard childhood vaccines. Kids who have APS and are taking immunosuppressive medications should avoid live-virus vaccines (such as the measles-mumps-and-rubella vaccine, oral poliovirus vaccine and varicella vaccine).”

Blaine had a blood clot on the left side of his brain, which caused his stroke. On top of this all, he also had a series of small seizures in hospital. Amber says it was the first time the doctors treating Blaine had seen this condition in a baby, and that they consulted with colleagues in Canada to discuss a treatment plan. He is currently on blood-thinning medication and aspirin (which also has a blood-thinning effect).

Two months later, Amber is amazed how far Blaine has come. “Today at 10 months of age, his arm and leg have improved to the extent that he can crawl and sit and stand. He is doing regular physiotherapy and is improving all the time. His little hand is still balled into a fist, but we are working on that all the time,” Amber says. She adds that they are going for regular MRI scans to keep an eye on his condition.

“My little bundle really is a fighter,” says Amber. “To this day, I’m grateful to everyone who prayed for him and gave me the strength to stay this calm and positive. They said we would get through it – and we did.” ●