A few weeks ago CJ and Kristin Spackeen left their home in Arizona for the East Coast to pursue the dream of having their child treated at the Children’s Hospital of Philadelphia (CHOP). Their story is one of perseverance with a wonderful result. Their son, William, just over two months old returned home yesterday, on July 4th, from Philadelphia as a cured baby. You can read the full story on their blog, which is on the CaringBridge website. They are wonderful writers and describe their journey in great detail. I highly recommend you read it.
For those of us who have children with congenital hyperinsulinism (HI), this ending is like a fairy tale. Where the child is born and treated is of great importance, and this is a case where everything came together. CJ and Kristin were very lucky that the personnel at the hospital William was born in made a diagnosis of HI very quickly. Prompt diagnosis reduces the chances of neurological damage. The hospital was also very responsible in terms of monitoring William’s sugar level and making sure there were no episodes of prolonged hypoglycemia.
While the hospital provided the family with excellent care, like the vast majority of U.S. hospitals, it does not have an expertise in treating HI babies who are not diazoxide-responsive. CJ and Kristin, with the help of their family and physicians learned about CHOP’s Hyperinsulinism Center. They learned that CHOP has treated hundreds of children with hyperinsulinism and that a good number of babies have focal disease, which can be cured if the focal lesion is located and removed. It is a heartwarming story. It all worked out for William. He was able to transfer to CHOP, he did turn out to have focal disease, the lesion was removed, and William is cured.
Here’s an excerpt written on June 21st from the CaringBridge blog in Dad’s own words: “Well the big day is finally here. We are so glad to be here and we believe now that all the effort it took to bring us to CHOP is finally worth the wait and is going to pay off. We loved the hospital staff and service at Cardon but we are so grateful to be having this surgery here. Had we remained at Cardon the strategy would have been to start removing William’s pancreas from the tail end in sections and continuing up towards the head until they felt they removed any lesions. This would have inevitably made no difference to his condition, or worse since his focal lesion is located in the head. Being armed with all that we are here and knowing the details of my genetics and info from the PET scan, we’re heading into surgery with the best team in the world, and best chance of a good outcome.”
Yet, the journey, getting from Arizona to CHOP, was anything but simple. Due to the fact that the U.S. has such a complicated patchwork system of paying for healthcare, these transfers are never easy. It took weeks of discussions with hospital and insurance company decision makers. It took contacting elected officials and working with CHI to make this happen. The family never gave up and never lost hope.
Read more about Baby William at http://www.caringbridge.org/visit/William-James.
