Cully's Diagnosis

On April 9, 2013, we found out we were going to go from a family of three to a family of four. Tillie Ann announced to our family and friends that she was going to be a Big Sister!

We were overjoyed to be adding to the family just 18 short months after Tillie.  On July 1, 2013, at the 20-week ultrasound we were thrilled to find out that Cully Charles Kuhl would be joining our family in November 2013.  During the ultrasound they were only able to identify two chambers of his heart and scheduled a second ultrasound and cardiogram. 

Unaware of the journey that we were about to begin, Carl and I went to our second ultrasound on Thursday, July 11.  The ultrasound and cardiogram revealed that only the right sight of Cully's heart was properly developing, in fact, the entire left ventricle of his heart was not developing. He was diagnosed with Hypoplastic Left Heart Syndrome (HLHS).

Our family spent the next 48 hours learning about HLHS and trying to understand what the future could hold. We received positive news late on Friday, July 12 that tests run the day before revealed no chromosome abnormalities.  We were over joyed with the news, while HLHS is a very rare heart defect that was fatal in nearly 100% of children afflicted prior to the early 1990s, today nearly 90% of diagnoses result in a positive outcome.  

Within the first few years of his life, Cully will have to endure three separate open heart surgeries and will only have an operational right ventricle, but with treatment from a great care team and the support of our friends and family we know Cully will be one of the 90%.

Over the coming weeks and months we will be updating this blog with more information as we learn more.  

• The next month will be filled with many meetings to discuss Cully's treatment plans.  We are currently working with an excellent team from Minnesota Perinatal Physicians, Pediatric Cardiologists at the Minnesota Children's Hospitals & Clinics and will be delivering at Abbot Northwestern's' Mother Baby Center. 
• Cully will be delivered cesarean in mid-November at the Mother Baby Center.  The exact date will be set by early October.
• Surgery #1 will likely occur with in the first week of Cully's life.  The surgical procedure is known as the Norwood operation.
• Surgery #2 will occur before his 1st birthday, likely between 4 and 6 months.
• Surgery #3 will occur before the age of 6.

We very much appreciate all the support we have already received.  Please keep Cully in your thoughts and prayers.