In October of 2018, we asked some of our community members to share what they would want an expectant parent to know upon receiving a Spina Bifida diagnosis. Here are some messages that were left:

“You are your child’s best advocate
-You probably feel lost right now. That’s ok…it WILL get better
-This child will bring you so much joy and happiness
-Trust your gut when dealing with medical issues
-It’s okay to cry and be upset sometimes
-Your child’s milestones are going to be so much sweeter than you ever expected
-You are not in this alone, reach out to support groups. We are here for you
-You got this!” -Rachel Harmon

“Do not focus on the diagnosis itself! There are so many variations of Spina Bifida and it really all is unknown. Focus on keeping yourself healthy for the rest of your pregnancy and know you will love that baby like any other. You will be amazed by their strength and that is what will push you through and find your own strength.” – Amber Giangrande

“Nothing is impossible. I remember when my daughter was about 18mths old our neurosurgeon looked at me in one of our appointments and said “mom, she is a healthy, normal baby with SB & hydrocephalus with a shunt”. From that point on that was our mindset. We did not stop worrying and I still obsess over some things but guess what, she is now a healthy, active, strong willed 26yr old woman!”  – Naomi McGee Mccoy

“The information you will run into on google can be scary and most of it inaccurate for your child’s situation. I decided after seeing some gross things not to go to google for info on spina bifida. Talk to your doctors and other parents/families goingthrough it. Every situation is so different. I didn’t know what to expect but my daughter has showed me how strong she is. I think having spina bifida has made her more independent and determined in everything. It’s amazing to watch.” – Angela Fish

“Every spina bifida kid is different and special in their own way!!!! Yes, there are some extra needs, but I wouldn’t trade being a momma of a SB kid ever!!!!! We might all be different with the needs, but the heart is the same!!!” -Sarah Ann Fisher

“I would say that it is not near as frightening as it may sound in the beginning. Learning experience, yes, but I promise I would do it all a thousand times over again. There are so many new things coming out to assist with all the associated symptoms of Spina bifida, just take one day at a time. My son is just as normal & healthy as any other kid.” – Katye Clutter

“I was born with Spina Bifida and while there have been some challenges along the way I am happily married and have a healthy energetic 5 year old son.” -Stacey Barra Peterson

“Our daughter, Rylee, has was born in 2009 with Spina Bifida at L2-L3. She just loves life and she’s got so much personality! Kids at school are very inclusive with her, she has a lot of good friends. Sometimes yes, things are difficult tending to her needs. Sometimes she asks why she can’t walk and we tell her walking isn’t all it’s cracked up to be. She does see a therapist to address those kinds of issues.” – Laura Hamilton

“Try to find a family to connect with who has a child with SB. And your baby will always impress you – he/she will ” – Kate Slivinski

“Find and maintain a steady support system. Do not let the diagnosis scare you; Doctors are often trained to give ALL possible scenarios, even the really bad sounding ones. Love and support your child and make sure they have a support system too, especially with other kids with SB. Be their advocate and teach them to be their own as they get older. The best thing my mom and my doctors ever did was teach me to recite my medical history and to speak up for myself.” -Austyn Blais

“Spina bifida doesn’t equal low quality of life. In fact, I think MINE has been bettered. And both my girls with SB are happy, go to school and have friends!” – Amy Morris

“Remember each SB baby us like a snowflake…. No two are alike. Do listen to your heart. They will be absolutely worth everything to you.” – Laura Cal Marker

“My 24 year old daughter has been a blessing. She doesn’t let her wheelchair slow her down. She loves life and grows closer to Christ every day. She will tell you that she is just like everyone else just get a around differently.” -Letecia Tisha Pruett Dooley

“I was born with Spina Bifida. I am a healthy woman in her early early-mid 40s who has been married and learned to live on my own after my husband passed. We can do anything everyone else can. We may just need to find different ways to do those things.” – Andrea Johnston

Looking for more information? Check out Spina Bifida stories on The Mighty.