Changing the Delivery of the Diagnosis

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Today, you can change the trajectory for families of children with Spina Bifida, starting at the diagnosis.

Click the Donate button above before December 31 and your gift will be DOUBLED by longtime friends of SBA, Doug and Kristen Sorocco up to $10,000!

Can you imagine suffering through multiple failed fertility treatments, then finally finding out you’re pregnant, only to be told—incorrectly—that if you go through with it, your child will have no quality of life? 

Sadly, that is the reality thousands of expectant parents face every year when their doctors deliver the news that their baby has Spina Bifida, which typically develops before women even know they’re pregnant. 

Nicole and Charles Clegg, like many others, have lived this nightmare. 

What should have been a joyful occasion at her 19-week ultrasound was marred by the realization that “Baby A” had Spina Bifida. Instead of learning about all her options and getting an accurate picture of what life could be like if she chose to continue the pregnancy, she instead heard phrases like “mentally different,” “severely delayed,” “dependent on a ventilator,” “probably,” and “never.” 

According to Nicole, “There was a stigma placed on me that day. I’ve never been able to let go of it. I was made to believe the only reason why babies are born with a neural tube defect was from something I did wrong.” 

Of course, we know Nicole didn’t do anything wrong. But because medical education has not kept pace with the advances made in the medical care of people with Spina Bifida, expectant parents like Nicole and Charles are being given outdated information, making it difficult for them to make an informed decision around their pregnancy and leaving them with unnecessary guilt and trauma. It doesn’t have to be this way. 

You can put accurate information into the hands of doctors, as well as empower parents with the knowledge they need to make the decisions that are best for them. 

Thank you for being a vital part in our mission to change the delivery of the diagnosis.

 

For additional information on ways to make an impact, please contact Jenna Brown, National Director of Development, at [email protected]

 

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