Ben’s story: Compassionate care for craniosynostosis

“From the minute Ben and his identical twin brother Aaron were born, I could tell them apart by the size and shape of Ben's head. Where Aaron's head was roundish, Ben's was smaller and sort of pinched around the forehead. I chalked it up to him being wedged under my rib and having to be helped out of the birth canal.

At the twins’ six-month check-up, their pediatrician mentioned that Ben's metopic sutures had fused. I asked what that meant and she said he would just have a pointy forehead. Okay then.

The first time I ever heard the word craniosynostosis was on the blog of an acquaintance from high school. Her daughter had been diagnosed and while reading it, I thought that her symptoms sounded exactly like Ben's! I emailed our old pediatrician (we loved her, just not the mega practice she was with and had switched when the twins were three months old). She told me to come in. She took a bunch of pictures and emailed them to Ruth Trivelpiece at the Center for Craniofacial Care. And so our journey began.

Meeting Dr. Jennifer Rhodes and Dr. Ann Ritter put us at ease. They truly treat your child as if they are their own. Both agreed that Ben was sort of on the fence as far as whether or not he was more than a mild case. Having his identical twin there really helped the doctors be able to compare. We took a wait and see approach. Two months later, with the help of pictures from birth and his twin, Ben was diagnosed with moderate metopic craniosynostosis at 11 months old. Surgery was scheduled for December 12, six weeks after the twins’ first birthday and two weeks before Christmas!

Now my husband and I had made the mistake of googling and had lots of questions and fears. We read about blood loss, eyes swelling shut and much scarier stuff. We were terrified. Dr. Rhodes answered every single question. We decided to get a series of shots called Procrit before the surgery. This would help Ben create more blood cells and hopefully not require a blood transfusion.

On December 12, we said goodbye to our baby boy and watched them wheel him to surgery. This tiny form on this big hospital bed. We were worried not only about him making it successfully through surgery, but also about him still looking like his twin.

Seven hours later, Ben's surgery was done and he was screaming his head off. We spent two days holding Ben upright in our arms. The scar looked scary. A wavy line from ear to ear. But my sweet Ben did not have his head shaved. Dr. Rhodes had told us that he would not have his curly hair cut and she was right. A sweet woman who works at CHoR braided his hair so the surgery could be done. They care that much!

Ben did not require a blood transfusion. He hardly lost any blood. Yes, his eyes swelled shut and it was heartbreaking to see, but all that passed in the blink of an eye. Ben's swelling took about six to eight months to completely go down. Best of all, Ben looks exactly like his twin brother and his scar is almost invisible and we really have to look for it a year later.

Dr. Rhodes, Dr. Ritter and the staff at CHoR made a terrifying and traumatic diagnosis bearable. The care that they give the child is really genuine, caring, compassionate and loving!”

-Ben’s mom