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First trimester

How to have a safe pregnancy when you have haemophilia

13 April 2021 | By Glynis Horning

With World Haemophilia Day on 17 April, here’s what you need to know if you have the condition – and are expecting a baby.

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If you have haemophilia, you lack blood-clotting proteins and so bleed for longer than most people. You can have the condition mildly or severely, which can be dangerous, especially if you bleed internally – into your joints, which can damage them over time and cause disability, or into vital organs like your kidneys, stomach, gut and urinary tract and brain, which can be life-threatening.

"Any bleeding can be a problem if not treated," says Bradley Rayner, national chairperson of the South African Haemophilia Foundation (SAHF), a volunteer with severe haemophilia. This means you can be at high risk during childbirth, whether delivery is vaginal or caesarian – and so can your baby, if you have passed on this rare condition to them. (Around one person in 10 000 in the population is born with it, notes the SAHF.)

What is haemophilia?

Haemophilia is the result of a mutation in the gene responsible for the clotting factors in blood. "There’s a faulty gene in the X chromosome which is mostly inherited, passed on by mothers to their children," Rayner says.

"Males have more severe signs due to having only one X chromosome, while mothers and female children may show mild signs if they are 'symptomatic carriers', but most aren’t affected because their second X chromosome provides sufficient levels of the missing protein. If both their X chromosomes are affected, they suffer from severe haemophilia just like the males. Genetic counselling is a good option before having a baby." 

Testing and a safe birth

If you think you may have the condition or be a carrier, it’s vital to make your healthcare provider aware of this so plans can be made for a safe delivery, and special steps taken to avoid any injury to your baby. This includes not using forceps, a vacuum extractor or scalp monitor, avoiding heel pricks, and applying pressure to the site of the vitamin K shot all babies get at birth and other routine vaccinations, to avoid bleeding. Some women also bleed for a long time from the birth canal and you may need treatment to stop this.

If haemophilia runs in your family, doctors can do prenatal testing with amniocentesis or chorionic villus sampling, but in most cases they will test blood from the umbilical cord at birth to see if your baby has the condition. Without a test, you may not pick up on the condition in the first six months of your child’s life, because they’re unlikely to have a major injury that would lead to severe bleeding – unless they are circumcised. This should be avoided, or done in consultation with a paediatric haematologist.

Signs in your baby

The good news, says Rayner, is that with today’s medical advances, including gene therapy (in trials), those with haemophilia can manage it and have full, near normal lives; but many cases still go undiagnosed and untreated, and the cost of this can be high. These are common signs of haemophilia in babies:

- Your child may show bruising where you pick them up, or on their foreheads when they start to crawl

- Swollen, painful joints 

- Blood in their urine (which turns reddish) or stools (black in colour)

Can it be treated?

"Studies have shown that women and girls who carry the condition can be considered mild or moderate haemophiliacs and need treatment just as the males," adds Rayner. Best option is a haemophila treatment centre with a team of doctors, haematologists, nurses and others specialised in dealing with blood disorders. These are found in hospitals such as Chris Hani Baragwanath in Johannesburg, Dr George Mukhari and Steve Biko Academic in Pretoria, Groote Schuur and the Red Cross Children’s in Cape Town, and Inkosi Albert Luthuli and King Edward in Durban. See the complete list here

Treatment usually involves injections of medication containing the missing clotting protein or factors.

Depending on the severity of haemophilia, these may be given prophylactically, or ahead of a risky situation such as surgery, or after an injury – in which case it needs to be done fast. "Every bleed into the joints causes damage," cautions Rayner.

You or your baby’s caregiver can learn to give the injection, and later the child can be taught to do it. They should always carry it with them in case of a bleed. "It’s a small inconvenience to manage what was once often a fatal condition," says Rayner.

And with gene therapy being developed, there may soon be a one-time treatment to address the cause of haemophilia. For more information and support, contact the SA Haemophilia Foundation, call Julie on 082 553 5891, or Bradley on 082 882 6420 or 087 149 2946, or email [email protected].

IMAGE CREDIT: 123rf.com

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