In Part I, we learned Susan’s son, Ian, developed Plagiocephaly (flattening of the skull) as an infant. Through research, Susan learned that a cranial shaping helmet was key to the prevention of possible long term health consequences.
This is part two of Susan’s story as she moves from advocating for her child to advocating for military children with pediatric healthcare needs.
It was the fear of the unknown that became my reason for wanting a helmet for Ian.
As I started to do more and more of my own research, I discovered that putting a child into a helmet for Plagiocephaly isn’t about cosmetics, it’s about prevention. Something that I knew in my heart was being shown to me in research! Chronic ear infections and long term developmental delays could be the result of NOT putting my son into a helmet.
Again, I remember what my OB’s staff told me, “Trust my instincts” and so I did. I moved forward and trusted my instincts.
Ian was twelve months old by the time I was able to secure his referral to a pediatric neurologist, and because we were new patients, it would be another eight weeks before he would be seen.
Ian would be fourteen months old by the time a helmet was custom made for him. We had lost so much time due to poor information about Plagiocephaly, and lack of knowledge on TRICARE policy. We had to pay for his helmet out of pocket as well.I couldn’t believe that Tricare was willing to send my son to an ENT for tubes, but unwilling to pay for a helmet that could prevent additional long term health issues because of his flattened skull.
I cried many tears of frustration during that time. As my husband reminded me, we, as parents, do what must be done. Parents take care of their children not out of obligation or because being a parent is a job. Parents take care of their children because children need us too.
I did what I have always done; I took care of my child.
An Advocate is Born
The moment I decided to “take care of my child” was the moment I promised him and my family that no other military child and family should go through our experience.
Other military families must be going through something similar, but I wasn’t sure how to find them. I knew it would take time to find these families, but I couldn’t give up.
I started by contacting my senator and congressmen (both serve on the Armed Services Committee). Meanwhile, I was nominated for Air Force Spouse of the Year and re-shaping helmets was my cause.
I formed a support group and named it Cranial Helmets: Re-Shaping Our Children’s Future By Using Our Heads.
For more than seven months I have not stopped. I am now in the process of becoming a non-profit so I can help raise awareness, bring about a policy change, and raise funds to help military families.
Ian graduated from his helmet when he was 18 months old. His head is not perfectly round, but his ears aligned and the ear infections cease to be a problem. Ian is a happy, loving, wonderful child. I work with him on his alphabet, and play until we fall over with laughter and exhaustion.
There are days I wonder, “Did I do enough?” I think that will always be a question that plagues my heart and mind. I don’t know if I can answer that question and I’m not sure if I will ever be able to. All I know is that I want my son’s experience to be a learning experience for others.
TRICARE is a great insurance, but it’s not perfect. The gaps in preventative pediatric care are an issue that needs to be addressed. Military families endure more than most and the last thing my family or any military family needs to worry about is how to pay for their child’s healthcare.
So here I am, Susan Reynolds, an advocate for pediatric healthcare for military children. And yet, I’m still just a mom.