It was a surprise to find out in the Spring of 2008 that we were pregnant with a fourth child, but that turned out to be nothing in comparison to the shock that hit us during a 27-week ultrasound in August when our baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS).
In plain English, HLHS means that the left side of his heart is underdeveloped and non-functioning. It would take a series of three risky surgeries between birth and about 4 years of age to get his little half-heart configured to give him a chance of survival.
Rudy was born at UCLA Mattel Children’s Hospital on October 1, 2008 and had his first surgery, the Norwood, when he was five days old. While optimal timelines project about a month of hospitalized recovery, Rudy battled numerous setbacks that kept him in the ICU. His battles with chylothorax (lymphatic fluid in the chest cavity), trying to breathe on his own, and process food properly saw him return to the operating room four additional times (thoracic duct ligation, pleurodesis, tracheostomy placement, Nissen fundoplication/G-tube placement).
We were finally able to bring Rudy home to Santa Barbara for the first time on April 7, 2009. A C-diff infection took us back to the PICU less than two weeks later so our “permanent” homecoming happened on May 7, 2009. At seven months old, he was already past the typical window for the second surgery (the Glenn usually happens at 4-6 months) but the team wanted him to recover and gain strength. The doctors would have counted it a victory to have him home for six weeks so there is amazement that he has been home for nearly 7 years!
While the original hope and plan was that Rudy would be able to go back for the Glenn surgery, unfortunately this was ruled out by a heart catheterization at UCLA on October 21st, 2010. The team had been hoping for his high pulmonary (lung) pressures to drop so that his body would be able to survive the circulatory re-configuration that needs to happen. Unfortunately none of the drug or therapeutic interventions attempted proved effective after 18 months, leaving the course of action from here very unclear. In short, Rudy’s lungs wouldn’t allow him to survive the heart surgery he needs for his long-term survival. For the time being he was stable so, even if it’s against the odds, we prayed for his status to change and new courses of action to become possible. To everyone’s excitement, his next annual cath in September of 2011 showed some signs of improvement–Rudy is still not a candidate for surgery, but the fact that his pulmonary pressures dropped some indicates that there is progress. On May 31, 2013, Rudy had his first consultation with the heart transplant team at Mattel Children’s Hospital/UCLA. Although Rudy is not considered a candidate for a heart transplant at this time, he has an appointment at the heart clinic every 6 months for monitoring.
Rudy has been able to make slow and steady progress developmentally during this extended time at home, but even more important, he has been able to receive huge doses of love from our family, church and community. In the fall of 2011, he started school in a county special ed program and is now attending a local elementary school enjoying a fun weekly schedule of school and PT/OT therapy. His whole journey is a compounding of miracles: from his 7-month fight to get out of the hospital, to his little half-heart carrying him longer and through more complications than most thought possible, to the way he greets life with such exuberance, determination and joy.
This unexpected journey has been one of terror and beauty like we never imagined and we’ve found this blog to be very helpful for us in keeping people abreast of treatment details and goings-on in our family. We also find writing to be therapeutic, as this process includes so many significant and loaded moments to let pass without some reflection. We make no guarantee of objectivity or rationality, but are so grateful for the many people who read and pray. God is so good to see that we don’t have to walk through this alone.
Thanks for checking on us,
Rolf and Trish