With the heaviest of hearts, I share the news that our sweet Baby Frannie passed away early Friday morning at Vanderbilt Children’s Hospital. She came into the world a seemingly healthy baby girl on Monday, and in so doing gave us the happiest day of our lives. Unfortunately, we later learned that Frannie was born with a rare disorder of the urea cycle, a fatal inborn error of metabolism. This disorder causes a toxic buildup of ammonia in the blood, leading to irreversible brain damage and death.
Many times, infant deaths of this type go unexplained. We are fortunate that Vanderbilt is one of the few research centers in the country working on urea cycle disorders, as we were able to meet with a team of highly trained geneticists in the field to understand what was happening. We received wonderfully compassionate care from top-notch physicians and nurses throughout the horrific process, and are grateful for that.
Our deepest thanks to all those who have offered love and support this week. Matt, Ellie, and I are experiencing the greatest suffering and grief we have ever known. We ask for continued prayers, meditations, and positive thoughts as we move through this dark journey together.
We are beginning to work on plans for a memorial service to honor Frannie's life, and will post information here as the details fall into place.
In the meantime, some have asked about tangible ways to support us and to honor Frannie. In lieu of flowers, we'd like to request that people consider making a donation to the Vanderbilt Children's Hospital (http://www.vanderbiltchildrens.com/interior.php?mid=40) or to the National Urea Cycle Disorders Foundation (http://www.nucdf.org/support_our_mission.html).