A Spina bifida story

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At 12 weeks pregnant I politely declined to take part in any antenatal screening, confident in my belief that even if something was not quite right that I would continue with the pregnancy anyway (Down Syndrome being top of mind considering that I was now in the words of one of my work colleagues an Antique Mother). At 20 weeks I went to have an ultrasound scan to see if we were having a little boy or girl. Having had three daughters, I was terrified of having a boy – after all what did I know about boy bits?

 

January 12 2009 was the day where everything in our world turned upside down. We had the scan done and yes it was a boy. I did notice that the baby’s head was shaped a bit like a lemon but didn’t think anything of it. Like the majority of mothers in New Zealand, I went into this scan completely blind, unaware of its real purpose. The ‘anatomy scan’ as it is known to mothers, is not done to provide expectant parents with a picture of or sex of their unborn baby. The correct term for this ultrasound is the foetal anomaly scan. I was completely unprepared for the possibility that the ultrasound might end with an unexpected pregnancy outcome. Being a person with an enquiring mind I remember specifically asked the sonographer how they picked up any abnormalities.  I can’t imagine how the she felt at that moment. We merrily went on our way, husband practically skipped out the door, big sister was pleased she now had a baby brother to play with whilst I was left thinking now I have to learn what to do with boy bits! 

On the night of the 12th January the phone rang.

 

Our baby boy had been diagnosed with Spina Bifida and Hydrocephalus. Before telling family and friends I did some research. It occurred to me that now I had a lot more to worry about than what to do with boy bits. Isn’t it amazing how in a flash our perspective on life can change?

We met the Foetal Medicine Specialist at Waikato Hospital at the Special Baby Clinic. We were told that our baby if born, would not have the use of his legs, he would have significant brain damage, and would suffer from bladder and bowel incontinence. After digesting this information, we heard “ we recommend you consider a termination “. Our experience, and that of many other families has been that what is not presented is the full spectrum. There are children who are more badly affected than others and there are children who are doing very well despite their medical condition. This situation hold true for any disability. As a Christian I made it very clear right from the initial meeting that termination was not an option I would be taking. The process of meeting with Medical Specialists is an overwhelming experience for most if not all parents. We are not accustomed or encouraged to question their thinking or the prognosis given. They, in many ways, hold the power card in discussions held with expectant parents who feel inadequate and overwhelmed by the situation they now find themselves in. I can only imagine that this situation would be worse if faced on your own without support.

Facing a diagnosed foetal abnormality has forced me to reflect on the values held by our society. It occurred to me that so often we place a huge emphasis on having a supposedly healthy baby. Now there is nothing wrong with wanting a child to have ten fingers and toes but here is where I would like to throw in a paradigm shift. As human beings most of us have the urge to collect things - some of you will be nuts about old cars, some of you might collect old tools, I collect antique farm machinery. The interesting thing is that we choose to obtain, purchase or hoard items which to outsiders seem to be dusty, rusty, dirty or broken but on which we place great value. So why do we seem to accept only perfection when it comes to unborn babies?  We have a fundamental fear of accidents, injuries, old age or birth defects. I can guarantee that if we took a close look at ourselves that not one of us is perfect. We may have ten fingers and toes but equally we each have some habit or characteristic that causes us to have an inward limp.

The first year of life with Daniel passed by in a blur of appointments, admissions to Waikato Hospital and home visits by therapists. But it was during this first twelve months that I became more aware and agitated about the management of foetal abnormality diagnoses like ours by the medical system. As a support parent I began to hear stories shared by other mothers who have also faced a diagnosis of Spina Bifida.

My little boy Daniel is now 7 years old. He has bought great joy to our family, has been swimming since he was 6 weeks old (apart from the odd hospital interruption) and is happily enrolled in school. He is a happy, contented little boy who races around at home in his wheelchair and participates in sports programmes for children with disabilities. During his short life he has undergone many surgical procedures, 2 CT scans, 2 MRI scans and numerous xrays and done it all with a cheeky smile to boot. He enagages with everyone and soon finds a way into the heart of everyone he meets.

I'm so glad I made the decision to have him, my world has been enriched beyond measure. So if you are reading this and expecting a baby who like Daniel has been diagnosed with Spina Bifida, have courage, you can do this :-)