I have Spina Bifida & I love my life!

                                                            Written by Gabriela Statt, translator at Life Defenders’ Spanish division. 

In December of 2015, right after I graduated high school, I decided to take a year off. Though I had done well in my admission exam and could've started college right away, I still felt a bit immature to face the responsibilities of adulthood, and was not very clear about what my calling was. So I took my last year of freedom to have some time for self-discovery. Little did I know about the extraordinary journey that would begin that year.

Now, two years later, I’m not the typical 20-year-old. While most of my peers spend their free time going out, I spend mine speaking up for the weakest of all human beings: those still in the womb. During that year off, I became a pro-life activist, and haven't stopped for a single day since.

Before I get into my activism journey, I would like to share some of my personal story surrounding abortion, and how itshaped my views on this issue to lead me where I am now.

To begin with, my parents’ road to parenthood was anything but an easy one. After a miscarriage In 1995 and an aggressive fertility treatment, my mother got pregnant with me in March of 1997. She had a terrible first trimester, buteveryone was delighted at the news. I was going to be the first child, niece, granddaughter and great-granddaughter.The first in the generation.

On August 5th, the day of the routine 2nd trimester ultrasound, my mother’s doctor had a family emergency and was out of the country, so another doctor did it. Halfway through the scan his face suddenly changed, and without telling my parents anything he just kept staring at the screen. My father then saw him type two words on the computer that would change their lives forever: Spina Bifida. My father asked if I had it, to which the doctor coldly replied “yes".

Spina bifida is the most common type of congenital malformation behind Down’s Syndrome. It occurs when the backbone and membranes around the spinal cord fail to form properly, which in the most severe form -the one I have- can leave the nerves and meninges sticking out through and open wound in the person’s back. The higher the lesion is located, the more severe the damage will be. It can cause mild to severe motor disability, hydrocephalus, malfunctioning of the bladder (mostly incontinence), a tethered spinal cord and some other issues. It is believed that the primary cause of the condition is a lack of folic acid (hence the importance of taking supplements during pregnancy and before), though another link had been made between SB and radioactive or chemical pollution. For example, in the years following the Vietnam war, thousands of Vietnamese children have been born with spina bifida, but only in those areas of the country where Agent Orange was sprayed by American troops.

Back to my story . . 

The doctor then proceed to explain that I wasn’t going to be able to move my legs outside the womb, even though my mother says at that very moment I was furiously kicking on the ultrasound screen, probably in protest. He also said my brain was going to fill with water and shrink, and that I would never talk, think or do anything on my own. “Like a plant”, were his exact words. My father excused himself saying that he felt lightheaded, and as soon as he stepped out of the exam room he passed out, leaving my mother exposed, alone.

After two weeks of agony, once my mother’s doctor came back, they immediately made an appointment and told him what had happened. He did another ultrasound, and even though he had to confirm the diagnosis, he immediately told my parents that the scenario wasn’t half as bad as they had initially been told. My ventricles weren’t dilated, there was no fluid in my brain, and based on the level of the lesion he was confident that I would walk. With that new set of information, my parents spent the rest the pregnancy going through medical literature, searching for specialists and talking to other families of SB-affected children, and started to get prepared for the arrival of a baby with special needs. 

I was born by C-section on November 24th, 1997, and nine hours later I had the surgery to close the wound. I did have hydrocephalus, and a shunt was installed when I was three days old. I eventually stood up when I was three and a half years old and learned how to walk using a walker when I was four. I had three different types of walkers until I was nine, when I switched to a pair of crutches because they were way more practical. I am now able to take a few steps unaided and even walk for one or two meters, though I’m extremely unstable. When I was twelve it was discovered that the shunt was out of place, but that I had started draining the fluid on my own, which happens in about 1 in 4 cases. I'm constantly having UTIs. I’ve had twelve surgeries so far: the one on my back, three on my shunt, one on each hip, one in both hips, two on both feet, one on the left foot, one on my left ankle and finally one on my bladder, which didn’t work and I will have to undergo again in January next year.

At this point you might think that my life is hard, which is true… but at least I get to have one. Even though SB isn't fatal in any case, between 65 and 85 percent of babies who receive my diagnosis in the womb are aborted in the so-called developed world.

In order to get the data I just cited above, I had to scroll through horrendous testimonies of mothers who aborted their babies with SB and proudly say it was the best thing they ever did  because that child would have had only been a burden for them. Or even worse, because it was the “obvious” thing to do. All of them have been sold the lie that my parents were sold as well, with catastrophic consequences. This is the reason why I grew so fond of the pro-life cause, and began to write columns for a local organization during my sabbatical year. Realizing that disability-selective abortion is the earliest and biggest form of discrimination that we face as a collective made me so angry that I decided I couldn't sit down and watch. I had to do something, and prove to those people that I deserve to be alive.

I graduated high school at the top of my class and began my Social Work studies with the highest score in the college admission exam out of 70 freshmen. My goal? To work with women who are facing crisis pregnancies and disadvantaged mothers in general, maybe even open my own Pregnancy Resource Center. In the meantime, I want to continue writing columns, advocating for life on social media and translating articles for Life Defenders. I want to make a name for myself inside the pro-life movement, and I won’t stop until I make it.

My name means “God makes me strong", and I will prove that I deserve to have it.