A Family’s Journey

Our son, Joseph Emmett, was born with several congenital heart defects, including a large ventricular septal defect (VSD), severe Ebstein’s Anomaly, and a coarctation of his aorta.  His condition was not diagnosed prenatally, so we were completely shocked and unprepared when these problems were discovered.  He was quickly transferred to Lucile Packard Children’s Hospital Stanford, where he could receive the specialized care he needed.

Initially, the doctors at Packard recommended a series of surgeries that would result in a single-ventricle system.  However, before the first of those surgeries could occur, he suffered a severe episode of poor perfusion due to the problem with his aorta.  We raced to the hospital late that night to discover that Joey had been intubated and had a whole team of doctors and nurses gathered around him, working urgently to stabilize him.  It was a truly terrifying experience.

The doctors worked to get Joey stable enough for surgery to repair his aorta, which was successful.  Unfortunately, over the following weeks, it became clear that Joey’s heart wasn’t recovering as the team had hoped and wasn’t strong enough to support the single-ventricle approach.

They said that his only remaining option was a heart transplant, but it wasn’t clear that he was strong enough to survive that — and if he couldn’t, he wasn’t going to survive.

The next step was a cardiac catheterization, which would give the team more information about what was going on in Joey’s heart.  During the cath, Joey went into cardiac arrest. The team was able to resuscitate him, but it highlighted just how precarious his condition was.  The team felt it was best to leave Joey intubated to help take some of the load off his heart and to help him grow stronger.

The next few months were a constant struggle to get Joey strong enough to be listed for transplant and then to keep him alive long enough to get a new heart.  He battled line infections, a case of NEC, and several UTIs.  There were days where doctors swarmed his room to stabilize him.  His heart failure worsened to the point where his heart rate would spike up above 250, which he could not sustain.  We began to worry that we might lose the battle to keep him alive.

Finally, on November 17, 2015, a match had been found.  At 3am the next morning, Joey was taken down to the operating room. We barely slept that night, but the surgery was a success!  Joey spent most of the next six weeks, including Christmas, recovering in the CVICU. On January 5, 2016, we finally got to take our little boy home! A year later, Joey is thriving. He truly is our Super Hero!

“I cannot say enough about the medical staff at Lucile Packard Children’s Hospital. They quite literally kept our son alive, sometimes by what seemed sheer force of will, long enough to get the heart he needed.  We are incredibly grateful for their skill, knowledge, and determination.  The CVICU team — doctors, nurses, respiratory therapists, and many others– have been like a second family to us, and we still stop in and visit them whenever we’re there. The transplant team has been incredibly supportive and responsive to our needs throughout our journey.  There are too many people who helped us to possibly name them all, but I do want to especially thank Dr. Kwiatkowski, Dr. Sacks, Dr. Hollander, Grace Lee (our social worker), and Nancy McDonald (our nurse practitioner) for everything they’ve done for our family.  We are incredibly grateful to all of you to have our little boy alive and healthy!”

“Despite the odds against him, Joey proved to us and the medical team that he is a true warrior, and I can only hope that his story lets others know that anything is possible, no matter how insurmountable it seems in the moment. My advice to families going through this is to never lose hope, never give up, and believe in the impossible, because you never know what the future holds.”