Monday, October 10, 2011

Living with spina bifida

Hi, my name is Anna. I am four and a half years old and I have spina bifida. My identical triplet sisters, Allie and Emily, do not. I don't really know what spina bifida is. My Mommy and Daddy tell me that right after I was born, the nurses brought me to the NICU so that a doctor could fix my back. But I don't remember that.

I have a shunt too. It's this little bump right here on the side of my head. I don't really understand why I have it but sometimes I have tummy aches and Mommy says that it could be from the shunt draining.

I go to a lot of doctor's appointments and sometimes I'm scared. There are people I don't know touching me and big machines with weird lights and sounds. Mommy says that I've had four surgeries but I don't remember any of them.

I do everything that my sissies do. We go to school, gymnastics, dance and swim class. We play together all the time. I like going to the playground even though I can't do a lot of stuff at the green playground and need help. I get mad when Mommy and Daddy say that it's time to do my pee-pees or change my pull-up because I'm always busy playing when they want to do it. I don't understand why I can't go potty like sissies and the other kids at school.

I don't want to be different. I want to wear undies like sissies do. Mommy bought me some to wear over my pull-up but that's not the same. Sissies don't wear pull-ups. Why do I have to?

I don't like taking my medicine because no one else is taking medicine. It doesn't taste good and sometimes I get really hot and Mommy and Daddy say that it is because of the medicine.

Sometimes I get mad because I have spina bifida.


October is spina bifida awareness month. If I had written this post a year ago, it would have had a different voice.

Seven of every 10,000 babies born in the United States have spina bifida.

Lately, my heart has been heavy.

The American Pregnancy Association states that spina bifida is best prevented by taking 400 micrograms (mcg) of folic acid every day. Studies have shown that if all women who could become pregnant were to take a multivitamin with the B-vitamin folic acid, the risk of neural tube defects could be reduced by up to 70%.

As a mother of a child with spina bifida, it is very difficult to process this information without feeling like I failed my child. I remember taking prenatal vitamins after Abigail's death. Did I do so regularly? Maybe. I can't recall. I was mourning the death of my baby. No one ever said to me, "Hey, your vitamin levels might be a bit depleted from just having carried a baby to full term and there's a weak egg in your reproductive system just waiting to split into three babies. You might want to load up on extra folic acid."

My doctor, a maternal fetal medicine specialist, informed us that birth defects are quite common when an egg splits. Especially when one splits into more than two babies. As with Abigail's death, I need to believe that there are some things completely beyond my control. (Not very easy for a control freak to do.)

Over the past two years, I have received several emails from moms new to the world of cathing and their children hate it. They fight it with all their might and these moms reach out to me for advice. I remember those days of cathing and always respond that it will pass and cathing will simply become a part of your routine.

And so now, I need to reach out to moms with older children. Kids who finally realize that they are different. Older children who fight being cathed. Fight taking their medicine. Fight against being different. As Rich said, it's almost as if Anna finally 'gets it' and she's infuriated. I can't blame her.

This isn't the first shaky bridge we've had to cross and I am almost unfortunately certain that it won't be the last. As a mother to a special needs child, I need to make certain that my daughter grows up knowing that she is loved. That she is a beautiful and caring person. That she can change the world.

We're going to get through this, Anna. Mommy promises you.


JourneyWithTheCrosiers said...

Honestly written. Anna's point of view is perfect. Sometimes I hate Spina Bifida too. :) We have Beckett's 15 month checkup with our pediatrician tomorrow and I'm dreading it...filling out the development stuff when he's not walking yet. Just gotta keep pushing on. Hugs to you and Anna.

Alice said...

I am praying for her and for a cure.
I can't imagine how hard it is to be different than her two sisters at such a young age.

Mama said...

Oh, this post is makes me sad. I too wondered if there was anything I could have done differently during my pregnancy. I also wonder how or what is age appropriate to explain to my little girl's siblings. Hugs!

Amy said...

I don't have words of advice on the knowing you're different part, because Julia is only 2 1/2 and doesn't know.

But I can relate to the folic acid thing. Caitlin had an encephalocele, which is the opposite end of spina bifida - the whole was in her skull and her brain protruded. I get so mad when I read about folic acid and it reducing birth defects, and people saying "well I take prenatals so I am set". I did that. For MONTHS before we even started trying to get pregnant, b/c we kept postponing our "let's start trying date", so I figured it was best to just take it and be prepared. So I am with you, I have to think some things are just beyond any control.

Krystle said...

Here come the tears.

I haven't emailed you back, and i'm sorry. For some reasons sitting down to type an email seems like an incredibly hard thing to do, especially because I think it validates her future in some way, if I type it out.

She's asleep right now, so I do have a free moment.

First of all, thank you so much for this post.

Second of all, thank you for your kind email.

We go back to neurosurgery this week and i'm going to ask for a referral to the spina bifida clinic, I think that's our best next step in getting her to the right direction.

I don't know how we are going to deal with this, but I just try to keep perspective, that it could always be worse, and I love that little girl to death.

Lastly, the folic acid/b vitamin prevention stuff. REALLY REALLY REALLY gets to me.

I play the blame game on myself like no other. I took vitamins and an EXTRA 3mg of folic acid for a year before we got pregnant. I really did take it quite faithfully (it helped with my migraines)..and yet, for some reason, something still went wrong in that first month of pregnancy.

I don't understand, I want a reason. I want someone to be able to tell me WHY that if I did everything right, she still has a neural tube defect.

I don't see that happening anytime soon.

Thank you for this post, I'm going to have to start looking for SB resources, so I guess the clinic is the best place to start.

yamilovesemma said...

All I have to say is that this post made me cry.

Patty said...

I, too, have a child who is angry and frustrated with how she was made. She is allergic to much so that she has to carry her EpiPen everywhere and be vigilant to not come into contact with nuts. She can't sit with her friends at lunch. She can't eat food at any parties or most restaurants. She's different. And she's ticked. But, she's compassionate to others who are different because, as we say, "everybody's got their 'thing.'" Even if you can't see it everyone is dealing with something. I don't know how to make it better for her except to minimize the impact it has in areas that I can control and make sure she knows I'm on "her team."

Cindy said...

I am not the mother of a special needs child but I know first hand that no matter what we do, what preventions and precautions we take, there are things that are out of our control. We can beat ourselves up pretty good over it, blaming ourselves, agonizing over the what ifs. But that doesn't change the reality. And it hurts us. I know how angry our children can get. I know how unfair life is sometimes. I rage over it when my daughter does. But all I can do is tell her I understand, hold her and tell her we'll get through it together. Love and strength to all of you posting here and to Sarah for writing such a touching post.

A and W mom said...

This post made me cry. As someone who had to face a difficult diagnosis as a young adult ... I feel for her, trying to imagine having faced something like that, coming to understand it, at 4. I understand the anger. Sending tons of love and prayers for you all as you navigate these waters. You really are an amazing mom, Sarah.

Amber Ellen said...

Your post made me tear up. I sometimes wonder if I could have done anything different during my pregnancy. Big Hugs! Anna is a tough little cookie

Sarah said...

Thank you all for your comments. For those of you who have little ones dealing with medical issues or have lost a little one, my heart goes out to you. We are not alone.

Hope's Mama said...

This post cracked my heart wide open. I've often thought about you and the folic acid. Even if you were taking it, you were not to know you were going to get pregnant again so quickly, and with triplets. You absolutely can't blame yourself. You did the very best you could.
Your daughters are beautiful,all four of them. And you're an amazing, caring mother.

Hope's Mama said...

This post cracked my heart wide open. I've often thought about you and the folic acid. Even if you were taking it, you were not to know you were going to get pregnant again so quickly, and with triplets. You absolutely can't blame yourself. You did the very best you could.
Your daughters are beautiful,all four of them. And you're an amazing, caring mother.

Becky said...

I just love reading about Anna, all your girls really, you are such a good mom to them. I can about imagine how Anna feels when her sisters don't have the same struggles. I read about Anna and often wonder how Liam would be doing if he didn't die in surgery. Wondering if he would've still needed a shunt, cathed, or if he could walk or not. I am so happy to hear though that she can walk.
Now being prengant again I am scared for this baby. I would love him/her the same if the diagnoses turned out the same, but taking my 4g of folic acid daily in hopes it doesn't.

Lori Cutler Turner said...

You don't know me but a dear friend of mine follows your blog and has asked me to read this post and try to leave you with some words of encouragement. I am an adult with Spina Bifida, I am now 33 years old and have a 6 year old son. So here goes, I will try. I still get mad sometimes because I have Spina Bifida but I would not be the person I am today without having it. I don't go potty like the others but I wouldn't have it any other way. I am truly blessed and feel as if I have true care and compassion to all with disabilities because of being born with Spina Bifida. I wish I could change the world, I wish I cure all birth defects and diseases, but I do NOT wish I could just be like everyone else. I did when I was a child but not now, I like being me. I am bossy, strong-willed and the most determined person you will ever meet. I have to be, in order to be me. If nothing else, please remind Anna as much as you truly can that she was created to be something great, and she should always just be Anna!