Saving Little Hearts

Will's Story

Our son, William ("Will"), was born five weeks early on October 10, 2005 via c-section at Vanderbilt University Hospital. We knew from the 18th week of pregnancy that he was going to be born with some abnormalities, including congenital heart defects. At birth, he was diagnosed with the following: Coarctation of the aorta, double outlet right ventricle (DORV), Hypoplastic left heart syndrome (HLHS), single kidney, and cleft palate.

At four days old, life flight took our sweet baby Will to University of Michigan so that Dr. Edward Bove could perform his first open-heart surgery, the Norwood Procedure. The surgery itself went beautifully, but some complications occurred afterward. It was discovered that Will had suffered a stroke during the surgery, which caused a small brain bleed. His little brain became slightly swollen, which required neurosurgery. A VP shunt was placed so that the extra fluid in his brain could drain into his abdomen. Then, Will was having trouble coming off his ventilator, and it was thought that his airway may have been injured from his breathing tube. The doctors were pretty sure he was going to require a tracheotomy, so we asked that Will be transferred back to Vanderbilt Children's Hospital for the procedure, if needed.

On November 22, 2005 we arrived at Vanderbilt, eagerly awaiting the Vandy doctors' evaluations. As it turned out, Will did need a tracheotomy, which was performed on December 14th. Will did very well, and after a few issues with infections, we prepared to take him home.

About three days before Will was set to be discharged, he deteriorated suddenly and we came very close to losing him. A heart cath was performed and it was determined that Will was in need of another open-heart surgery soon. So, on February 2, 2006, Will was transferred back to University of Michigan so that his surgeon, Dr. Bove, could perform the Rastelli Procedure.

February 9th, 2006 was surgery day. From the very beginning, Dr. Bove said he was not very hopeful. At one point, they said that Will was not coming off the bypass machine, and that they would try to keep him alive long enough so that they could bring him upstairs so he could pass away in my arms. They said that there was no hope. But, a miracle happened, and Will came off the machine. In fact, he remained relatively stable overnight and for the next several days. At one point, they even talked about getting him ready to go home, when he developed an infection in his chest incision from his trach. His problems started to snowball from there, and on March 5, 2006 we decided to let him go so that he could be with Jesus.

Will lived for only 147 days. It sounds so short. And it leads to the profound mystery of life…and to the most asked question in life…Why? Instead of asking ourselves, “Why did he die?” We choose to step back and ask a greater question, “Why did he live?” It only took Will 147 days to do amazing things and to touch so many people.