First off, let me say I am not writing this on an impulse. In fact, I have given this a lot of thought and have decided to give this situation a “grace period” in which I could cool off, reflect, cry, pray, gain perspective from others in your situation, and allow myself enough time in which to answer you without anger or bitterness.

Of course, this time has allowed me to be more merciful and fair to you. But please know I needed this time as much as you did. It’s not easy for me to process my emotions about an issue that is so personal to me.

But you emailed me asking for advice and answers. After choosing to terminate your pregnancy of a child with spina bifida, you want my advice, my insight, my wisdom, on how to have a “healthy” baby.

How’s this?

I have nothing to offer you. No advice, no answers, no wisdom, no tips, no magic crystal ball to predict what your next child will be like.

My first instinct, upon reading your email was to hate you. After all, you managed to break down wall after wall of cautious, precarious illusion of self-esteem that I have spent 28 years painstakingly building. And for 28 years, it has worked for me.

When I first began blogging, I was moved by the many moms who contacted me. Most have had children with spina bifida, and some were pregnant with a baby with spina bifida and wanted advice on how to handle the birth of a child with my disability. Or maybe they wanted solidarity, just to know someone else out there in cyberspace can relate. I was elated at the idea of being able to help these women, to give them a glimmer of hope for what the future held for their children. I offered them my friendship and unconditional support. In return, I have been rewarded many times over by their reciprocity, their encouragement in my difficult times, and their genuine happiness at my triumphs.

Then I opened your email.

It’s as if the fortresses of support and encouragement from these moms and little white lies I told myself quickly eroded around me. I was exposed. Vulnerable. You shattered my illusion of invincibility.

I built a community of support and encouragement, of sharing knowledge about the good, the bad and the ugly of spina bifida. Women all over the world thank me for simply sharing my story, trivial as it may seem to many, because the story of my normal yet fulfilling life gives them hope. It helps them to know their children can aspire to this.

And yet I cannot help you, because you aborted your baby. You cut the common thread we would have shared. Now all I see is a dark chasm between us, because I am nothing like you. No, I am that child with spina bifida, the one you chose to abort. I look in the mirror and I see the life that was discarded because it wasn’t deemed worthy of living.

You ask me for advice because you don’t want your next baby to turn out like me, and I am angry beyond words. Because in spite of all I have accomplished in my life, no one wants to have a child like me. Not even my own mother would have wanted that. But she bore me. And that is what frightens me the most — that maybe, just maybe, your story and my mother’s are not all that different. You each won the lottery no one wants to win.

I wish you well … and maybe next time, take a second glance at your lottery ticket.

Thank you so much for contacting me. I can’t imagine how difficult it must be to contact someone with spina bifida after losing a baby with spina bifida.

First, let me say I am very saddened for your loss. However you lose a baby, it is heartbreaking and it must be so difficult. I admit, upon first reading your email, I was quick to judge you. I felt angry that you did not want to have a baby with the condition that I have, as if having spina bifida means my life is not worth living.  This is why I did not answer you immediately.

After much thought, crying and praying, I have come to realize there are many like you who do not have the information they need to make this decision. I know for a fact that many doctors put pressure on mothers to have an abortion when spina bifida is diagnosed.

I have lived with spina bifida my whole life, but I have never been a mother, so of course my advice is based on what I know from having spina bifida myself.

Let me start by saying there is no way to guarantee you won’t have another child with spina bifida. Nobody can promise you that.

Sadly, there has not been much research or information about spina bifida until recently. Honestly, the only way to guarantee you won’t have a baby with any disorder or disease is to not get pregnant.

A B vitamin called folic acid has been shown to help prevent a child from having spina bifida, but even if you take it as recommended by a doctor, it only works about 70 percent of the time. So that is not going to promise you a baby without spina bifida. Here is a link to some information about folic acid published by the March of Dimes, a wonderful organization that helps prevent birth defects and support families of children affected by birth defects: www.marchofdimes.org/pregnancy/folic-acid.aspx  

Because you seem very determined to not have a baby with spina bifida, the best piece of advice I can offer you is this: If by chance you do end up becoming pregnant with another baby with spina bifida, please know that it is not a death sentence, or a tragedy.

I have met many, many families who have children born like me, with spina bifida, who, like me, grow up to be happy, successful, even healthy adults. Yes, they sometimes go through many surgeries or other medical complications, but most of us grow up happy and make friends, and as adults, get jobs, go to school, even get married and have our own families. I have played with many children with spina bifida, and they are absolutely beautiful and precious, and very smart and active.

It is possible to have spina bifida and live a happy, healthy life.

I work as a blogger, writer, and social media professional, and I am often invited to speak at events and conferences around the United States. I have connected with adults with spina bifida and their families all over the world who reach out to me for advice or simply to know someone else understands.

I do not mean to say I never get sick or feel pain, because I do. I have had 19 surgeries and many, many hospital visits. My family has been through a lot, and it is not easy. Pain is a part of life, and even “healthy” children will get sick, hurt, and suffer at some point. All parents feel their job is to take away their child’s pain, but like my parents have done with me, their job is to stand by her, to hold her hand when she is having a hard time. My parents are my best friends and love me so much.

So please don’t think having spina bifida means I have a horrible life. Thank God, I live a wonderful life and I feel grateful for every minute of it.

I hope this serves to encourage you, no matter what doctors say, no matter what others say to you, to be the best mom you can be for your child, whether he or she has spina bifida or not.

That’s all you can really do.

May God bless you and please contact me if you want to talk some more. I am here.

Laurita