My Actual Letter to the Mother who Aborted her Baby with Spina Bifida

 

A note to my readers: 

Recently, I received an E-mail from a mom who contacted me for advice. She had a pregnancy affected by spina bifida, and at the recommendation of her doctor— she chose to abort. In addition, she wanted my advice on how NOT to have another baby with spina bifida. As you might have read in my previous post, I felt the entire gamut of negative emotions upon opening and reading that E-mail— anger, sadness, judgment towards her, and just an overall sense of melancholy that seemed to pervade my emotions for several days. 

In a desperate attempt to sort out my thoughts, I took to the only place I felt I could safely share my heart— this blog

 

CamelMeme

 

 

The backlash was almost immediate. I expected there would be pro-choice advocates (I am still very much on the fence in the abortion debate— so don’t ask me) who would argue that she acted on her rights. Really, I anticipated that. 

What I didn’t expect was the anger and vitriol that spewed, even from moms of children with spina bifida who know me personally. I was accused of not being a good advocate because a good advocate “doesn’t think of her own feelings.” 

How is it even possible to do that!? I could never put my own feelings aside, for it was my own feelings that helped me become an advocate for the spina bifida community. It is my emotions that fuel my passion for activism and education. I could never turn off my emotions. That is just absurd. 

However, I also was not prepared for the outpouring of love, support, and encouragement from many friends and followers who applauded my article. They felt it was a good tribute to how many parents of kids with spina bifida— and adults with SB, especially— feel when they come across stories like these. I will be forever grateful especially for these people, for they buoyed my spirits up during one of the most challenging times I’ve encountered in my 5+ years of blogging. 

What a difference four days makes! 

After a few days away from the circus (really, it was ridiculous!) I decided to finally reply to this woman with a clear head and lighter heart. I’ve also been physically sick with various illnesses which have had me very preoccupied. 

So, without further ado, this is what I actually said to her— verbatim, raw, uncut, no edits. And it was from the heart. 

 

Dear _____________,

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 and sorry for your loss. However you lose a baby, it is heartbreaking and it must be so difficult. I admit, upon first reading your E-mail, 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 that my life is not worth living. This is why I did not answer you immediately. But after much thought, crying, and praying, I have come to realize that 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.

But, I receive many E-mails from mothers who are pregnant with a baby with spina bifida, and many who have children with spina bifida.

Let me start by saying that there is no way to guarantee that 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 that 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 in recent years 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 the 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: http://www.marchofdimes.org/pregnancy/folic-acid.aspx

Finally, because you seem very determined to not have a baby with spina bifida, the final piece of advice I can think of offering you is this: if, by chance, you do end up having 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, and 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 can grow up happy and make friends, and as adults, get jobs, go to school, and even get married and have their own families. I have played with many children with spina bifida I have met through these families, 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. My work has taken me to different places, as I am often invited to speak at events and conferences around the United States. I have connected with adults with spina bifida and families all over the world who reach out to me for advice or simply to know that someone else understands.

I do not mean to say that 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, get hurt, and suffer at some point. Every parent feels their job is to take away their child’s pain, but like my parents have done with me, their job is to stand by me, to hold my hand when I am having a hard time. They are my best friends and love me so much.

So please don’t think that having spina bifida means I have had 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

 

© 2015, Laurita. All rights reserved.

15 thoughts on “My Actual Letter to the Mother who Aborted her Baby with Spina Bifida

  1. You do your parents and all other people in the SB community proud with your response. Thank you for trusting us one more time with your heart. Much love and respect, Carolyn

  2. That was very well written and no doubt from the heart. It reminded me of a woman who once approached me. We had seen each other many times but she never spoke to me and always kept her distance. It was not until one night at a friends home, after she had a few drinks, that she finally approached me. She admitted to me that she once aborted a child due to Spina Bifida and that it was a grief that she had not moved past. She also admitted that watching my daughter laugh and play, despite her Spina Bifida, made her guilt more than she wanted to admit and she apologized if she came off distant to us. She told me she carries this grief with her daily and it has affected her marriage and her relationships with others. We had a very good talk that night. We never went on to be good friends but we do see each other on occasion in passing, in a small town. She is happily married to the same man and they now have a beautiful son. I’m not sure our talked minimized her grief but hopefully it helped her find the joy beyond the pain.

  3. Hi, correct me if I’m wrong but I have a child with spina bifida that seems way more severe than yours…. Not everyone functions as well as you do, each case seems very different so for you to judge a mother on her decision doesn’t seem right.

    • Hi,

      I understand that, and that’s why I answered her the way that I did, and NOT the way I had originally intended to respond.

      Of course, it’s difficult for you to know what level of severity of spina bifida I have, unless you are me.

      And in writing my response to her, and my post here, I wanted to be entirely honest about my feelings. It is very different to see this from the perspective of an adult with spina bifida (not from the parents’ perspective) and have the mental capacity to understand that there are people that would want to abort someone like me. It’s unfathomable and I don’t think it’s easy for anyone in my position to grasp that fully. It hurts.

      So, correct me if I’m wrong, but for you to judge me when I’m only speaking my personal truth doesn’t seem right.

      Take care,

      Laurita

  4. You handled that beautifully. Very few people possess the gifts that you have to move and inspire others through your writing & activism. Although it may not always seem like it, every word & every action makes an impact. Sure, this was a negative but you turned it into a positive by educating her a little bit and giving the best advice possible given the situation. Most importantly, one day there’s going to be another woman who has been given the same advice, but that woman is going to find this blog BEFORE taking action, and that baby will have a chance. Keep doing what you’re doing.

  5. Laurita,
    First time I really read your blog(no time). Amazing, I am very proud of you. well done. May God continue to bless you and guide you.

  6. I read this… This was very will thought out and written!!!!!!!!!!! I myself was born with spina bifida… I have lived a full life… I live on my own I have driven a car, worked for wire harness company did yard work for 14 yrs…. So your absolutely right it is not a death sentence… It is what you do with it in life… (Let it get you down or deal with it and figure ways to get around)…

  7. Beautifully written. My initial response was the same as yours. I then realized that no one’s decision negates my life. I am a happily married nearly 50 year old mother and grandmother who is a semi-retired RN who just happens to have myleo at S1/L5. I wish the medical community would tell our stories as well as the doom and gloom. Isn’t that what a informed decision is all about?

  8. I love your attitude and strength. I’m not taking about being strong because you are living with SB, but living with those who do not have it. :). As a mother and at high risk of having a child with SB, I can see all the scary things that my child may have to encounter. However, as an adult with SB, I can see how my experience would enhance my child’s life. Do I want my child to have SB? Of course not. But I know that my life has been an incredible adventure and full of lessons I would not have learned about it had I not have been born with it. My sister was born with a more severe form of SB than I, and she has a full and happy life. So….there you go! A whole lot of SB people running amuck and living happy lives….gasp! What shall we do with us?! :)

  9. Ever since abortion was made legal, it has cheapened the value of life. When we become God and make decisions about who lives or dies there is going to be consequences. The fact that this woman reached out to you at all sadly should tell you that she regrets her decision. She too is a victim of the way the medical community white washes the truth. “it’s just tissue” it’s not a baby it’s a fetus. I am a parent of a daughter with spina bifida, I count it a privilege to know her is to love her. I can’t imagine my life with out her. I am thankful for everyday. Let’s be less quick to condemn and faster to forgive the pain and agony that one irreversible moment of silence via an uninformed decision made has cost her.

  10. Very well written response. As a person with SB I’ve also been faced with that question from others and I know how difficult it can be to answer. Your answer was the perfect balance of gentle but firm ‘reproach’ (perhaps not the best term but the only one I can come up with) and understanding. Bravo to you Laura.

  11. Mija, you are far better person than BB. A giant ::BOPASO:: con el abanico is what she’d have gotten de Babushka! This was a beautiful, intelligent,well written,compassionate, even toned response for someone who was definitely not that with you. (Si, le estoy dando un bopasito via esto a ella) I applaud you and your parents for your being, y abrazotes fuertes y de corazon a su familia. BB2U

  12. As a father of a beautiful 7 year old with spina bifida I am taken back to the days when my wife and I first heard the news at a 20 week ultrasound that our child had spina bifida. The pressure from the doctors at that point became intense to have an abortion. It was so much so that we somehow in the fog of sorting out what all this meant scheduled an appointment for the abortion. We didn’t want to do it but the doctors were so convincing telling us our child wouldn’t have a good life or might die soon after birth. I remember sitting in the doctors office that day and saying “what if you are all wrong?”. At that point we got up and walked out. A great relief came over both of us and we began to focus on welcoming our first child into the world. It hasn’t always been easy but I wouldn’t trade my daughter for the world. Things aren’t as bad as the doctors wanted us to believe. She is an inspiration to all. She goes to regular school and has tons of friends. I hope this message reaches someone who may be pressured like we were they understand that the medical community is trained to steer towards abortion when a birth defect is discovered.

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