Three moms talk about how this condition affects their families.
Haemophilia is a rare, hereditary condition that is passed from a mom to her baby at conception. Since they only have one X-chromosome, it’s more common in boys and put simply, the blood of a haemophiliac doesn’t clot normally.
If your child is diagnosed with haemophilia (usually in the first year of life), he won’t necessarily bleed more profusely or more quickly than other children when he cuts himself, but he will bleed for a longer time.
Fortunately, in most cases external wounds aren’t all that serious and it’s a myth that haemophiliacs bleed a lot from minor cuts. In fact, it’s the painful, internal bleeding that you need to worry about.
These haemorrhages – that often start at the same time as crawling – will happen in your child’s joints and especially in his knees, ankles and elbows. The bleeding can then progress into his tissues and muscles and if bleeding occurs in a vital organ, such as the brain, a haemophiliac’s life is in danger.
Make no mistake about it, without proper treatment haemophilia is crippling and can often be fatal. The good news, though, is that medicine has advanced so much over the last few centuries that today, with modern treatment, most people with haemophilia can lead full, active lives. We spoke to three South African moms whose sons are doing just this.
Joy Cromhout, mom to Christian (5)
When Christian was about a year old he started crawling, and I noticed that as a result he had bruises on his legs all the time. It was very troubling.
I have a daughter who’s two years older than him and even though I know how normal it is for babies to bump and bruise themselves constantly - particularly when they first become mobile - I knew that something was up. Christian didn’t necessarily have to knock into things to get a bruise and sometimes all it took was for something (like the step leading out of our kitchen) to press into him for a bruise to appear.
After some deliberation (because you don’t want to rush your kids to the doctor for every little thing) we decided to take him to the paediatrician before he started walking. Looking back, I’m so glad that we decided to be safe rather than sorry.
After doing blood tests, Christian’s doctor confirmed that our baby boy had haemophilia. Once we’d visited the Charlotte Maxeke Johannesburg Academic Hospital, which has a specialised haemophiliac unit, we were informed that Christian had severe haemophilia A.
Basically, what this means is that his blood is missing what is called factor VIII and so when he bleeds, be it internally or externally, his blood doesn’t clot properly. Fortunately though, there’s on-demand intravenous treatment for this condition that can replace the missing factor if he has a heavy bleed.
Christian’s only had to have the treatment about five times in the last two years, and I think that’s really good going. It’s hard not to be concerned after every fall and I try hard not to be a helicopter parent, but I’ve learnt that usually scrapes and bruises clear up on their own.
The important thing for me is that I don’t want him to grow up feeling he’s different from others. Obviously, if he has a really bad fall or hurts his head, it’s another story and we’ve had to implement some very strict “no running in the house or on the paving” rules. Hopefully as he gets older, he will become less clumsy, and the haemophilia will get easier to manage.
Tasneem Ahmed, mom to Muhammed (10)
It was only when Muhammed started daycare at the age of four months that we first noticed there was a problem. He’d come home covered in bruises (and thumbprints) and I was left questioning whether or not he’d been mishandled in our absence. We took him to the doctor, and after two sets of blood tests came back clean, we really weren’t sure what to do.
Then when Muhammed started crawling, around eight months, his knees and elbows would get terribly swollen. We didn’t know at the time that internal bleeding of the joints caused this.
We took him back to the doctor for more blood tests and still they came back clean. By nine months, he couldn’t straighten his left elbow at all, and after an orthopaedic surgeon tried to massage it to straighten it and failed, he underwent more blood tests that revealed nothing.
A month later, when exactly the same problem presented itself in the same place despite painful massaging at home, the orthopaedic surgeon did even more tests and sent our boy for an ultrasound. Only then did they discover that he had haemophilia A and he was admitted to hospital that very night to get some factor VIII into his bloodstream.
As he’s gotten older, the hospital visits have decreased, but when he was little and accident-prone, he had lots of bleeds and so he had weekly intravenous treatments at Charlotte Maxeke. Today, for the pain in his joints that are brought on by overexerting himself, Muhammed is on a new type of prophylactic treatment that’s currently on trial in South Africa.
He takes it twice a week and so far it’s helping him enormously with his joint pain. Still, Muhammed doesn’t take
part in any contact sports and never really started them in the first place. He knows that if he gets hurt we have to run to the hospital, so it’s just not worth it.
Danika Alberts, mom to Andreas (7)
At just six weeks, Andreas’s bum turned a shiny, shiny blue after one of his baths and a few months later while playing on his mat, the same thing happened to his wrists. He was diagnosed with an iron deficiency and while an iron supplement worked for a bit, once he started crawling the bruising got worse.
Even though his doctor told us that this was normal, and that boys bump and bruise themselves all the time and tend to be rougher than girls, I knew after he bumped his head that something was wrong. The bruises Andreas got didn’t look like the bruises my friends’ kids got, so we took him to a different paediatrician who immediately diagnosed him with haemophilia.
In total shock, we turned to the Internet for more information, and were soon left thinking our baby was going to die. Luckily, we found a specialist in Johannesburg who could guide us in the right direction. Even though we now walk around with ice, a bandage, plasters and even local anaesthetic to hand, Andreas has, on the whole, been living a normal life.
In the beginning, he received on-demand intravenous treatment after an injury, but for the past two years he’s received additional prophylactic treatment containing factor VIII three times a week. It works for about eight hours and definitely reduces the severity of his joint bleeds and helps with the pain he experiences as a result of these.
Right from the start, we infused him at home because we knew it was something that we needed to learn how to do. At first, we had a nurse come to the house and do it – you don’t want to be the one hurting your child when you’re meant to be the one he comes to for loves and cuddles, after a fall – but now that he’s older, it’s easier.
Not only is he more responsible and knows his limits, but we can tell when he needs an infusion and when he doesn’t. If he does, we involve him in the 20-minute process by letting him mix the factor and choose a vein himself.
While contact sports are out of the question for our boy, we encourage Andreas to swim because the stronger his body is, the fewer bleeds he’ll have. Ultimately, we like to think of him as boy with haemophilia and not a haemophiliac who is a boy.
Are you or your kids living with haemophilia? We'd love to hear your stories. Email us at email@example.com