There have been quite a number of articles about Spina Bifida this week in the national press, or at least in the online versions. You can read some of these by looking at the links at the bottom of the page, including one that was featured on the Telegraph website. For those who don't want to read ahead, the general jib of these articles concerns research which shows only a third of women are taking folic acid before falling pregnant. As such, their babies are at risk of developing a neural tube defect, such as Spina Bifida.
I appreciate you may not really know what Spina Bifida is. Rewind the clock 18 months and I was blissfully ignorant too, but received a crash course during the pregnancy of my second son after his 20 week scan revealed that he had drawn the short straw and was the 1 in 1000 unborn children affected by the condition. While 9 out of 10 Spina Bifida pregnancies are terminated in the UK, we chose to continue, with my gorgeous little man born last February.
Where does folic acid fit into this equation? Well, if taken in the months prior to conception, it is said to reduce the risk of neural tube defects by up to 70 per cent. A number of countries have introduced folic acid to bread flour to ensure than mums to be are getting a sensible dosage. Part of the stir in the media this week has been the discussion of this happening in the UK. Cue lots of negative comments about governmental meddling by inserting man made chemicals into staple food, which will only be to the short term benefit of females of child bearing age. I'm not going to make a case for or against messing with a loaf of Warburtons, but I do think that if more people were aware of what Spina Bifida is, there would be a lot more people wanting to proactively take folic acid.
Spina Bifida for my son has meant the following. His spinal column did not form properly, causing part of the spinal cord to exist outside his body, in the form of a lesion on his back. Hours after his birth, a neurosurgeon operated, to repair the spinal column. However, the exposure of the spine results in nerve damage. As a result, the function level below the lesion is impacted, meaning bladder and bowel issues along with a degree of lower limb paralysis. He requires catheterisation five times a day. We're yet to fully discover his mobility impairment, though the physiotherapists are optimistic he will be able to walk, albeit with assistance. A wheelchair is likely to be necessary for anything further than short distances. We'll need to adapt our house or look for a more suitable property. We're already becoming familiar with a range of clinicians, including his neurosurgeon, bladder specialist, physio, paediatrician and urology nurse. There are medical appointments a plenty, including MRI scans and videourodynamics. From reading stories from other parents of Spina Bifida children, we appear to have got off relatively lightly, with no additional surgery or stays in hospital to date. Long may that continue.
Don't get me wrong. I'm not complaining about our lot. We made our choices. There were 'options' presented to us. I'm very much in the pro-choice camp, and can fully understand why others may reach an alternative decision when faced with the prospect of all that is listed above, or in many cases far worse. The prospect of more women taking folic acid, whether hook or by crook, is a welcome development, particularly if it results in less families having their world turned upside down following an anomaly scan.
Of course, while taking folic acid could be good news for 70% of affected pregnancies, there will still be Spina Bifida babies due to other 30%. My wife took folic acid when we were trying for a baby. A Dutch lady who responded to some of my recent tweets informed me that she did the same, and yet her newborn son has Spina Bifida. Whether folic acid is introduced to bread or not, there will still be families like mine who will receive a diagnosis they were not expecting. And that is why I am a passionate supporter of the Shine Charity. Not only do they actively push the Go Folic message, but they are also on hand to provide information and guidance about Spina Bifida (and Hydrocephalus). When we first learned about our son's condition we had more questions than answers. Shine helped us to gain a broader understanding of the condition and what it could mean in practice. Their input was invaluable, certainly more so than the regimented 'Spina Bifida Bad' voices we heard from various doom merchants we spoke to in the days and weeks following the scan.
I was rather annoyed with one article that referred to Spina Bifida as a disease, before a couple of tweets to the editorial team saw the word amended to condition. My son is certainly not diseased. He is just like any other 12 month old. He loves to sit and play. He claps his hands. He takes great joy in splashing his daddy with bathwater. He can be a real pain in the backside when he decides to wake up at 4 in the morning. He is now trying to crawl and making a bloody good fist of it. Admittedly he looks more like a commando slithering through mud on his elbows, but he's finding a way to get round despite his mobility impairment. He was awarded Star of the Week at his daycare provider today. Was he pleased about this? You bet!
I am incredibly proud of my little ray of sunshine. There are going to be challenges ahead, but they will be overcome. Spina Bifida is not a dirty word, and thankfully there are organisations like Shine who are prepared to educate about the condition as well as spread the word about the benefit of taking folic acid.
I will be doing my little bit to spread awareness too, by running my first half marathon next month, wearing a Shine vest and fundraising for the charity. You can support me by offering sponsorship on my Just Giving page - all donations go straight to the charity and any pennies you can spare will help to support families like mine that are affected by those two little words.
Thanks for reading, and wish me luck on 22 March when I tackle 13.1 miles!
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