Henryk Joseph Kuehn

Henryk was born with a rare congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS) where the left side of the heart does not develop fully. Since the chambers on the left side do not develop correctly, the right side must take over all the work and requires multiple open heart surgeries (typically 3) to try to help the blood flow. In the 1980's these children were called "blue babies" because they didn't have the correct blood flow and have lower oxygenation. Most children require a heart transplant sometime in their life to survive.

Henryk was diagnosed at 20 weeks gestation with a heart condition after noticing he only had a 2 vessel umbilical cord instead of 3. After an amniocentesis was performed it was determined his condition was not related genetically. At the age of nearly 5 he had additional genetic screening done and it was determined that he actually had a genetic condition called SMAD-2 that caused the heart condition. He also was born with aspleenia (spleen never developed in utero) and his heterotaxy syndrome (organs are not in correct places like intestinal malrotation and aorta on the wrong side). Henryk was very lucky in that he got to skip the first heart surgery which is usually performed the first few days of life due to his specific anatomy. Henryk also was diagnosed with failure to thrive because his heart worked so hard he could not gain enough weight by eating on his own so he required a gastrointestinal feeding tube from birth to be able to receive additional nutrition. At 6 months old Henryk became sick with a respiratory illness and was flown emergently to the nearest hospital. He suffered brain damage from lack of oxygen and the doctors told us he would never walk, talk, or get off a respirator based off of the images neurology was seeing. He was able to do all those things and never showed signs of brain damage like they said. Henryk lived a beautiful life for 5 years with a contagious smile and heart of gold. He loved playing with his siblings and loved arts and crafts as well as his favorite movie character Knuckles. He is forever loved and our hero.