Spina Bifida Awareness Month

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In honor of National Spina Bifida Awareness month I have asked my sister to share her family story about my nephew’s diagnosis with this disease.

 

Before we got pregnant with Adrian, I had been going through some medical trials myself that I had not shared with anyone (until now of course). About 2 months before finding out I was pregnant I was advised by my gynecologist, that it would be unlikely that I would ever be able to conceive a child of my own. At the time I had just turned 19 years old and although kids weren’t on my mind, it’s a big life changing moment when someone tells you that you will never be a mother.

Flash forward a couple of months and I am in the emergency room for what I thought was a bad reaction to an anti-depressant that I had recently started taking, only to find out I was actually pregnant! Surprised- confused- relieved? The emotions were all over the place.  

The day we found out that Adrian had Spina Bifida is a day I will always remember as if it was yesterday. It was the day after the super bowl and the day Denny’s was giving away free breakfast. My boyfriend and I were so excited because this was the day we were hopefully going to find out if we were going to be having a little boy or a little girl! After the ultrasound was completed the nurse had simply stated she needed to make a call and disappeared for a long period of time. The first 5 minutes felt fine but as time passed I was able to sense that something wasn't right, when the nurse finally returned she passed the phone to me and told me they wanted to talk to me. My heart instantly dropped and every bad thought imaginable flooded my head to the point that I was only hearing every other word the woman was saying. I had never heard of Spina Bifida until that moment and was unclear what it meant and how it was going to impact my babies life as well as mine.

That same day we were sent to a high-risk clinic to meet with a geneticist. Although, I know this woman was only doing her job I still hate her to this day and find outrage in my meeting with her. She began to explain to us what Spina Bifida was, a birth defect of the spine. Think of a zipper, you zip your jacket up to the top and there is a bubble where the “zipper” is no longer connected, essentially that is what happens to the spine on a baby with Spina Bifida, the spine never fully develops. That’s how it was explained to me and that is still how I explain it to this day, but what she said next is what I remember most. She began trying to convince me that abortion was the best solution. I actually walked out of the meeting after telling her to F*@k off, and knowing what I now know about Spina Bifida, living it, and watching my son grow, I know I made the right choice.

We continued the pregnancy as if everything was normal, we met with a specialist prior to birth and we were doing our best to cope with the situation. The day I went into labor was the 3rd scariest day of my life because I didn't know what to expect when my son was born. Like most Spina Bifida births, our delivery would be via C-section, as this method is safer and less traumatic for the babies opening in the back.

When Adrian was born, all I heard was a brief cry and then he was gone. It wasn't like most births where the baby is passed to the mom as soon as possible, no my son was immediately taken away for evaluation. I wasn’t able to hold Adrian until 2 days after he was born; I relied on pictures that my boyfriend and family members would show me since we were at different hospitals. For any parent I am sure you can understand that this wasn't easy and I had a hard time dealing with it all.

We spent our first month at Primary Children’s Hospital with Adrian undergoing major surgery and having trouble with his breathing, we spent every day there with him from morning until night, I couldn’t tell you the amount of tears I cried watching him go through everything in that first month. We ended up being allowed home with oxygen support but that only lasted 2 weeks before we were back at the hospital due to Adrian having excessive fluid in his brain and needing to undergo another surgery to have a shunt placed in his brain that he will now have for his entire life.

Everyday was a challenge that first year; Adrian had to have multiple hospital visits including an additional surgery at 8 months old. He had to be catheterized at home and was dependent on oxygen for a long time.

Adrian’s level of Spina Bifida is an L4-L5 impact and has so far only impacted him to a level of physical challenges. Adrian cannot feel from the knee down and was born with clubbed feet, which will have to be operated on as well as a series of castings to help correct them.

Due to the lack of sensation Adrian cannot walk alone but does have a walker and leg braces to assist him and at this point in the game I think this is what is hardest for me. My son has the most vibrant personality with so much energy and it kills me to see him watch other kids “running” or “climbing” knowing that he has a desire to do these same things.

It hurts because from the very beginning of this journey I have felt the guilt that it is some how my fault that my son has to go through all this. As a parent you want to take the pain away from your child but in some cases you can only put on the front that your strong because hopefully that will make your child just as strong but our children are stronger than we think.

I see my son looking at everybody as if he is missing out but the reality of it is my son knows no different and has learned to adapt to do the things he wants to do. I remember when Adrian had his leg correction surgery and I had been crying, he woke up and the first thing he said to me was, “why you crying mom”, he has never let any of his life moments get him down and I have never seen my son truly sad. My son’s spirit has been what has kept me going, he has changed who I am and my outlook on life, he is the prime example of happiness and because he is strong he has made me strong.

   

I wouldn't change anything about my son, because I firmly believe my son is who he is today because of the things life has thrown our way; I am where I am in life because of what we have experienced. Our life has proven to us that Adversity is truly a blessing in disguise and although our journey has only begun our optimism will keep us going. 

**Nobody is completely sure what causes spina bifida. Scientists say most likely it is due to a combination of inherited (genetic), environmental and nutritional factors.

Women who do not have enough folic acid during the pregnancy have a higher chance of giving birth to a baby with spina bifida. Experts say that women of reproductive age should make sure their folic acid intake is adequate. Nobody is sure how folic acid intake prevents spina bifida from developing.

If a woman gives birth to a baby with spina bifida, she has a higher-than-normal risk of having another baby with spina bifida too (about 5% risk).

Some medications, such as some for treating epilepsy or bipolar disorder have been associated with a higher risk of giving birth to babies with congenital defects, such as spina bifida.

Women with diabetes are more likely to have a baby with spina bifida, compared to other females.

Obese women, those whose BMI (body mass index) is 30 or more have a higher risk of having a baby with spina bifida. The higher the woman's BMI is over 30, the higher the risk