Bentley Strong

Bentley is 8 years old, & was diagnosed with HLHS at 20 weeks in utero. After being born he would have three major Open Heart Surgeries that would give him a chance to live a semi normal life. In between surgeries he has had several heart caths, & hospital stays. He had his first open heart surgery at just three days old. Bentley has ran into some other unexpected health issues along the way. After his fourth open heart surgery he lost flow to his left lung. So now he is dependent on his right lung. Surgeons spent 7 hours opening the left lung back up and it closed within two hours. Not to long after losing flow to his left lung he then developed PLE. PLE is Protein Loosing Enteropothy. Protein-losing enteropathy is a broad term that refers to the loss of serum proteins from the digestive tract. This causes an abnormally low level of albumin (a protein made by the liver) and other proteins in the blood stream and can lead to edema (retention of fluid in tissue) and ascites (retention of fluid in the stomach). In some cases, the loss of protein is due to abnormalities in lymphatic flow. In August of 2019 we did Pre-Transplant testing. Doctors decided we would try medication therapy to control the issues. It worked for a short bit, & then we were back and learned that he needed a new heart. We found out on his 8th birthday this year (11/12/2012) that he would soon be listed for a new heart. We were very overwhelmed, nervous, & scared. Bentley is aware of everything going on and we were honest with him about everything. We decided to move forward after talking through together and with Bentley. Bentley was listed Status 1b on December 15th at 8:17pm. We are currently waiting at home & are grateful for that. Bentley doesn’t let anything hold him back, & always pushes forward with anything. He is strong, & is ALWAYS smiling no matter what. Today (4/9/2021) marks 115 days since he was listed for his new heart.