On the 6th day of Stand Tall Christmas

You get to meet Baby Joan

I’m going to share a Stand Tall story that I have never shared before, the story of baby Joan.  Full disclosure, this one is quite sad.

In the early days of Stand Tall, a family called me desperate for help with their 18 month old.  Something was wrong because no matter what they did, her head always flopped to the side.  She could stand, but couldn’t walk or really do much of anything because her head lay on her shoulder.  The family had visited every local doctor they could find and were at their wits end.  We did her X-rays and intake, then rushed the images off to one of our partner surgeons. 

He discovered that Joan was born with a “hemi-vertebrae” in her neck.  It means that one of her vertebrae was misshapen and her head flopped to the side because there was no bone to hold it up.  She would need surgery.  But, he wanted to delay the surgery for a year to let her grow more.  We informed her family of the good news, gave them a date for 1 year later, and sent them on their way.

We sent them away because there was no Phase 2 program back then.  No system in place to monitor the children regardless of their place the process and the unthinkable happened.  6 months later, her parents called me.  Joan had just died.  She had been sick for a few days and they tried to take care of it at home.  By the time they finally took her to the hospital, it was too late.  Sitting here writing this feels just as devastating as if they called me yesterday.  Of course I was sad, but more than that I was angry.  Angry at her death.  Angry at the unnecessariness of it.  Angry that I didn’t know sooner, so I could do more.

I vowed that day that we would never lose a child to a preventable, easily treatable illness.  Now, all the families have a Stand Tall staff member on the ground that they can contact for any reason.  This includes school problems, medical concerns, or just a little comfort.  We also have relationships with a variety of doctor including pediatricians, gastroenterologists, and dentists who are all available to treat our children.  Phase 2 is why we have a 100% success rate.  Every child who has entered the program receives monitoring, follow up care, and access to our extensive network.  I just wish we had this when we met Joan because then she could have “entered the program” and maybe she would still be alive today.

You can help us save children like Joan before it’s too late - be a Stand Tall Warrior by donating today. Donate now.