Ben - born 1990
On November 30, 1990, Benjamin, our second of three children was born. He weighed 8 pounds, 9 ounces and appeared to be very healthy. When he was being washed up, my mother in law told the nurse that Ben looked blue and her reaction was that this was common for newborns. The next day, the pediatrician told me that Ben's ductus was still open but there was nothing to be concerned about. We left the hospital when he was three days old but returned a couple of days later for blood work since he was jaundiced. At six days of age, he didn't seem to want to stay awake or eat so we took him to the pediatrician to be checked out. The doctor didn't like the way Ben was groaning and sent us to the hospital to get him evaluated. I remember looking at the admission paperwork that said "rule out congenital heart defect". Heart defect I asked? "Oh yes", said the woman, "they are just ruling it out". This had scared me because I had seen a TV movie about the life of a real girl with a CHD. That evening he was diagnosed with HLHS and we were given our options of a transplant or the 3-staged surgery. It appeared they were leaning towards a transplant but after seeking advice the next day, we transferred him to CHOP for the staged procedure.
Ben had his Norwood at 11 days of age with a recovery of 8 days; his hemi-fontan at 6 months of age with a recovery of 6 days and his fenestrated fontan at 21 months old with a 3 week recovery stay. He did get fluid around his lungs that needed to be "tapped" and an undiagnosed double ear infection which kept us in for a third of the total stay. After one day of antibiotics, we were out of there!
He has had only one emergency stay in his life which was in kindergarten when he had RSV. He had a pacemaker placed because a holter test (around the age of 9) which indicated he was getting low sleeping rates. Actually, he's on his second pacemaker because he got a small break in the wire.
All throughout school he has been in the gifted program. This year, Ben will be in 9th grade and will be in all honor academic subjects. He performs in school productions at every chance. He has also met all President Physical Fitness standards except for the one mile run - which he runs under the school's maximum allowed time. Ben ran on the middle school track team in the 8th grade and had a great time and improved his time for the mile run as well.
We have been very fortunate and blessed to have Ben in our lives.
Story by Ben's mother, Shari - Pennsylvania
Bridget - born 2000
Aubrey - born 2004