Our unborn son, Samuel David Trenary, was recently diagnosed with spina bifida and chiari II malformation. This means his spine didn’t develop or close properly in early pregnancy and his cerebellum is malformed. Right now, Samuel faces a high risk of decreased mobility, possibly never being able to walk, not being able to control his bladder or bowels, and will likely need a shunt to help redirect fluid buildup in his brain.
We’ve learned that there’s a surgery available in utero that can greatly reduce the chances that he’ll have to suffer these things. It cannot be cured or corrected, but this procedure could offer him a better quality of life if it means even one of those symptoms can be avoided. Doing this procedure in utero vs after delivery has shown a greater probability that he could walk one day, not need a shunt and have better control of his bowels and bladder. Right now we are doing our best to get this set up and have this done with the Children’s Hospital of Philadelphia (CHOP) based on personal research and doctor recommendations. However, the surgery must be done within the next three weeks—after that, the benefits of doing surgery after birth are reduced greatly. The surgery is something that has to be done either way, in utero or immediately after birth, and our hope is to do whatever it takes to give him the best possible outcome. We were blindsided by this diagnosis just a week ago, and the timeline is overwhelming.
We have no health insurance currently and are doing all we can to figure out some type of coverage. The first day of the consult alone to see if he’s even a candidate is 25-30k. The procedure will be hundreds of thousands, not including the required c-section for delivery after that. These costs are far beyond what we can manage on our own. We’re facing not only the surgery itself, but also travel, lodging, and many follow-up appointments. For those who know our family, you know we are not the type to reach out for help, but we are swallowing our pride and asking for support. We’re trusting God’s plan and the doctors He’s placed in our path, and we’re reaching out for help from our community. Any support for Samuel’s journey means the world to us as we fight for his best possible future.
