My daughter Gemma was diagnosed with a hypoplastic right venticle/double inlet left ventricle in utero during her 20 week anatomy scan. Babies with DILV have an intact left ventricle (the pumping chamber of the heart that pumps blood to the body) and a small right ventricle (the pumping chamber that pumps blood to the lungs). Both atria supply blood to the left ventricle, and as a result oxygen-rich blood and oxygen-poor blood are combined. This mixture of blood flows to both the baby's lungs and body.

Gemma was born on August 18, 2019 and underwent her first intervention at 5 weeks old, a catheterization to insert a stent in an opening in her heart (PDA). In the Spring of 2020, during the beginning of the COVID pandemic, she underwent 2 open heart surgeries at 9 and 10 months old. In July 2022 she underwent her third open heart surgery, the Fontan, and pacemaker placement 3 days later.  One year later Gemma is doing great despite her complex heart condition. These surgeries don't cure her CHD, but they allow her to survive with half a heart.

Less than a year after Gemma's last surgery, when we didn't anticipate another procedure for the near future, my 3 month old son went for a routine echo due to family history and something didn't look right.  Dylan underwent a CT scan in June that confirmed he also had a congential heart defect, Vascular Ring/Double Aortic Arch. Babies with DAA typically have airway obstruction from the ring pressing on the trachea and esophagus, leading to trouble breathing and swallowing. Thanks to our cardiology team this was caught early before Dylan really had any symptoms.  While his condition is much less complex than Gemma's, on August 11, 2023 Dylan underwent surgery to remove the ring.  Luckily the surgeon was able to do this off the pump and via thoracotomy which led to a much quicker recovery.  

The Children's Heart Foundation's mission is to advance the diagnosis, treatment, and prevention of CHDs by funding the most promising research.  This is extremely important to our family as we have seen firsthand how important early diagnosis and new surgical techniques are.  Continued research is required to improve the outcomes for patients with CHDs as they age.