Shriner's Hospital Evaluation

The following is an update on Luke's appointment at the Houston, Texas Shriner's Hospital for Children:

Luke has pectus excavatum (sunken chest). Many people live with this, never needing surgery. In the past year, Luke’s chest has become increasingly worse and now affects his breathing and causes pain. Dr. Dietz, the doctor that monitors his heart at the Johns Hopkins genetic clinic, referred Luke to a thoracic doctor in order to correct the pectus excavatum.

After being examined at the thoracic doctor’s office we were informed that Luke’s pectus excavatum was severe and he needed corrective surgery. We were sent home to have Luke’s CT scan, pulmonary heart function test performed and to raise the needed funds for the surgery.

We immediately began brainstorming the most effective ways to raise the funds needed for this surgery. In the meantime, I also applied to the Shriners Hospital for Children. We were initially denied help at the Shriners because of Luke’s heart aneurysm. I then reapplied, along with a letter from Luke's doctor at Johns Hopkins stating that Luke’s aneurysm was “slow growing” and that Dr. Dietz was referring Luke for this pectus surgery.

Not every Shriners Hospital performs pectus excavatum surgery so we ended up being accepted at the Houston Shriners Hospital. We met with the surgeon on March 18th, and he informed us that Luke's pectus excavatum was "unique", meaning the Nuss procedure (the less evasive surgery/the one I was fighting for him to have) would not be enough for Luke. The Nuss procedure would place a bar through an incision in both sides of Luke's torso and push the sternum out. He would have had to keep the bar in place for 2 to 4 years. Due to the fact that Luke's sternum is twisted almost 45 degrees, the Nuss procedure would not correct all of the problems.

Instead, the procedure Luke will have performed will open him across the front, going under muscle to realign his ribs and straighten the sternum in the process. The "normal" patient with this type of surgery typically has 3 ribs realigned, but again Luke's case is "unique" and requires the realignment of approximately 5 ribs. Luke will also have approximately 2 plates to hold everything in place. His surgeon expects a successful surgery that will improve Luke's quality of life.

Luke will be scheduled for surgery in a few months and we will be sure to keep you updated on his progress.

Thank you!