Imagine a life where you were paralysed below the waist, you couldn’t go to the bathroom on your own and your brain did not allow you to function normally for your age.
This is the reality of someone born with significant spina bifida.
Derived from the word for ‘split spine’ in Latin, Spina Bifida is one of a class of serious birth defects, called neural tube defects (NTDs), which involve damage to the bony spine and the nervous tissue of the spinal cord.
The neural tube defect, which involves damage to the bony spine and nervous tissue or the spinal cord and some vertebrae not closing properly, affects one in approximately every 1000 births.
Nerve signals to most parts of the body located below the level of the ‘split spine’ are damaged and a wide range of muscles, organs and bodily functions are affected.
Because the spinal cord does not develop properly, and vertebrae remain open, children born with this serious birth defect often face worsening health throughout their life spent in a wheelchair.
The parents of children with the worst cases of spina bifita often need to attend to their child like they are a baby, even as they grow into adulthood, which poses inherent problems as they become bigger and more difficult to manage.
The impacts of spina bifida
“The one thing that is constant with spina bifida is that there is a huge variety of impacts associated with it,” Bill Shead, Manager, Spina Bifida Hydrocephalus Queensland told Food Magazine.
“You get people who can walk and function relatively fine, and on other hand there are people so badly affected they can’t function at all.
“There are a small number of people who pass away from the affects of it.
“It’s usually around the time of birth and then there seems to be another danger period in the teens.
“The reason seems to be from associated brain malformation.”
Removing the chances
So what if we could prevent children being born with this debilitating condition? Luckily, we can.
A woman who consumes a 400 µg folic acid per day in the lead up to her pregnancy can essentially eliminate the risk of her baby being born with spina bifita.
Fantastic, take a supplement once a day for a month before you start trying to fall pregnant. Simple, right?
Not quite, because the problem is that a huge percentage – which nobody seems to be able to provide an exact figure on – of pregnancies in this country are not planned.
Therefore, those expectant mothers who weren’t planning on a pregnancy are not only looking down the barrel of a monumental change to their life they aren’t sure if they want, but they’re also more likely to end up with a child with spina bifida.
How many times have you heard someone say “we just stopped trying, and then next thing we knew, we were pregnant”?
Spina bifida is a life sentence for most children born with the condition, and also for the families whose lives are thrown into a spin by their child’s condition, so if there was a way to ensure children wouldn’t have it, would you support it?
It seems like the obvious reply would be a resounding “yes!” but when the suggestion of mandatory folic acid fortification in breads sold in Australia was suggested in 2007, many people were against the idea.
Food Magazine has spoken to several organisations that educate and treat children with conditions including spina bifida, and all agree that the rate of the neural tube defects are tending down, due to the rising awareness of the importance of folate for women.
Robyn Brice Director of the Orange Early Childhood Intervention told Food Magazine the suggestion of folate in bread was met with some criticism, because “when anything is made mandatory, people don’t like it, they want to feel like they have a choice.”
It has been mandatory for Australian millers to add folic acid, which is a form of the B vitamin folate, to wheat flour for making bread since September 2009.
It means nearly all bread in Australia will contain added folic acid, besides those with flour represented as “organic,” though many of those bakers will add it voluntarily.
A spokesperson from Food Standards Australia New Zealand (FSANZ), the body that regulates the mandatory fortification, said the initial opposition also came from within the industry.
“There was initial opposition from the flour milling industry as they believed it would add considerable costs to their operations for new facilities, and increased ongoing operating and verification costs,” she told Food Magazine.
During the two-year consultation period, FSANZ comprehensively assessed the potential health benefits and risks from increasing intakes of folic acid across the population and based on all available scientific evidence, adding folic acid to wheat flour for making bread in Australia is safe for the whole population.
It says it is “continuing to monitor emerging scientific research on folic acid and public health and safety,” and that “no new evidence has emerged to change our original conclusion that mandatory fortification with folic acid is safe.”
How do you get folate?
The mandatory fortification was a desperate attempt by Australia and New Zealand to ensure women were getting enough folic acid, because despite recommendations, most women were not consuming enough, particularly those who had no conscious plans to fall pregnant.
“For many years, Australia and New Zealand had introduced a number of initiatives to increase the folic acid intake of women planning to or who may become pregnant to reduce the risk of their children developing neural tube defects,” the FSANZ spokesperson told Food Magazine”
“For example, a health claim on labels of foods containing a minimum amount of folate including folate-fortified food, education programs, voluntary folic acid fortification of foods (breakfast cereals and bread) and encouraging women to take folic acid supplements.
“Despite these initiatives, most women of child-bearing age were still not consuming enough folic acid.
“Mandatory fortification of wheat flour provides additional protection against neural tube defects.
“Mandatory fortification is one initiative to reduce neural tube defects and other initiatives will continue to be important.
“These include existing voluntary fortification measures in other foods and encouraging women planning to or who may become pregnant to take supplements.”
Thankfully, regulation was introduced in 2009 after a two year consultation period, despite the opposition, and spina bifita rates in Australia are consequently on the decrease.
“There has been an enormous decrease in the number of children we treat for spina befita,” Brice, who has worked at the Orange centre for 18 years, told Food Magazine.
“I can hardly remember the last time we had a child with spina bifita,” she said.
“We have about 80 families who access our centre and I have not seen a child with spina bifita in at least five years.
“Awareness has been raised about folate and how important it is and I believe it was a fantastic move by the regulators to make it mandatory.”