Spina Bifida Diagnosis: What I wish I knew



Amy with Family

Now that my child is seven years old, I can reflect on the dreadful days/weeks/months after receiving the news without tears in my eyes. We received Camden’s diagnosis at 19 weeks gestation, and I remained on bedrest for the remainder of my pregnancy due to a compromised cervix. I spent nearly 5 months depressed, angry, and sad. The things that I know now I am sure would have spared me the suffering that I endured then, I am sure.

I wish I had known to use resources including friends, family, social media groups, providers, and The Spina Bifida Association of Iowa. I felt alone and depressed. I felt that no one could understand that I was mourning the loss of my “normal” child and I felt guilty and helpless. I wish that I would have had someone tell me that they had been where I was and that things would be okay. I wish that I would have had someone to give me advice that medical experts could not.


I wish that I knew that things would be different, but fine. Looking back at my fear, anger, and sadness, I would have told myself that different is not bad. Different can be empowering. I would have told myself that being an advocate is difficult but worth it.

Today, I can appreciate how far I have come as a wife, mother, and advocate for my little boy. I can appreciate how hard I have worked with faith, love, and by surrounding myself in relationships with those that can/have walked in my shoes.

I have been in your shoes. I am here as a cheerleader, listener, and advocate.

Dear Expecting Parents,


Ashley with family

You are not alone! We have been in your shoes and we know how you are feeling. Lots of questions without answers. Lots of emotions all at once. Stop. Take a deep breath (or maybe 10). Know that you are not alone. We are here to help. We’ve put together 5 things we wish someone would have told us on Diagnosis Day in hopes of helping others learn from our mistakes.

  1. As hard as it will be, DO NOT Google Spina Bifida. There is a lot of useful information out there, AND a lot of garbage. Use the resources provided here first. We’ve cut out the garbage for you.
  2. Find a mentor or parent support group. We are here to help. We have lived all your questions ourselves and can help you through the hard days ahead and to find the joy that is to come.
  3. Do ALL THE THINGS expectant parents do. If you don’t, you’ll regret it. Push through the emotions now because you will never be able to get back that 25-week baby bump photo or redo a gender reveal. Celebrate the amazing things your child will
  4. Surround yourself with supports. When you are ready, share the diagnosis with friends and family. Let others help you. Seek counseling or reach out to a pastor if needed. It takes a village to raise children, and you will need them every step of the way to support you and your child. If you don’t have a village, you will through us, the Spina Bifida Association of Iowa (our biggest support system & community).
  5. The future is BRIGHT. We say it all the time, our lives have changed for the better raising a child with Spina Bifida. We have new friends we never would have met. We have a different view of the world that has made us more kind, more inclusive, and better people. The rewards of our life far exceed the challenges.

We hope that our suggestions and our story help you through the days ahead. Please consider us part of your village and know that we and others of the Spina Bifida Community are here for you. You are not alone.