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Benjamin, 2008

Benjamin, born 2008

Benjamin was diagnosed prenatally with HLHS. The diagnosis was unexpected and devastating. I read other people's stories on this site and felt there was some hope. He had his first surgery at Children's Hospital of Philadelphia when he was 3 days old.


Everything went very well. When the time came to pull the IV lines which were connected to his heart directly, his heart started to bleed and they had to open his chest immediately to stop the bleeding. The resulting drop in blood pressure caused a stroke. The nerve controlling his left vocal cord was also severed leaving his left vocal cord paralyzed in the closed position. We were home in time to spend a very thankful Thanksgiving with family.


He was 6 months old when he had his second staged surgery. He flew through that surgery and the surgeon told us it couldn't have gone better. He had surgery on a Wednesday and was released from the hospital on Saturday - an amazing 3 day hospital stay. Benjamin continued to see the neurologist following his stroke until his first birthday when it was determined that he was suffering no effects of the brain injury. He underwent the third staged surgery this past May. We were told that the most common complication of the third surgery is pleural effusions. Benjamin spent a total of 2 weeks in the Cardiac ICU because of his effusion. His worst day he lost 2L of fluid from his chest tube. Unknown to any of us, he was losing clotting factor through that tube and in addition to the blood thinners prescribed by the doctors, his blood became so thin that he developed a gastro-intestinal bleed. Seeing the blood in his diaper was terrifying, but the hospital staff had a gastro-intestinal team up to his room almost immediately and the condition was stabilized within a very short time.


When he returned home, Benjamin quickly returned to his very normal, happy little self. He runs, jumps, climbs, plays and keeps up with his sister who is 2 years older. He currently takes Aspirin to keep his blood thin and Enalapril to lower his blood pressure in hopes of reducing the leakage of one of his valves. He eats normally, drinks a lot, and is almost always thirsty. My faith in God has been my support through the tough times, and I praise Him that all three surgeries are behind us now and we look toward the future with bright hope.


Story by Benjamin’s mom, Ellen – Pennsylvania

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