Pablo, born 1999
My son, Pablo was born in August of 1999 with Transposition of the Great Arteries and a VSD as well. He had the "switch" procedure done at 13 days old, as the birthing process caused a bleed in both the left and right ventricle and they wanted to hold off with the anti-coagulants. We were in the hospital for 5 weeks with many up and down days...I am sure many can relate.
Currently he is a very active kid. Though he was also born with a hypoplastic right hand and his right thumb is virtually useless, he manages to play any and all activities which involve balls. He has found ways to compensate that no employee in the"Birth to Three" program would have believed possible. He enjoys playing the piano and suffers through the viola (with the school). He brings so much joy to our lives and I believe he senses how fragile he once was and is very grateful for life and everything that comes his way. He was born into a bilingual family and has two languages to juggle. I am always pleasantly surprised when we travel to see "abuela" and he breaks right into Spanish when she sees her.
He still has some pulmonary stenosis which we monitor annually and which seems to be "growing with him." His hands are often cold. He also sweats at night and his resting heart rate is very low (around 40). He is a little guy and his younger brother has outgrown him by inches already...but this is small stuff in the grand scheme. He is with us, thanks to Dr. Dennis Mello!
This wonderful organization that Lenore started was in its infancy when I had Pablo. My husband and I would have been so incredibly grateful to have been able to read posts from other parents with special children like my Pablo.
UPDATE (March 2017):
He has been accepted in UCONN's school of business for next year! He still has pulmonary stenosis on both sides, a strong murmur, and a very low resting heart rate. All appear to have been stable throughout puberty, which was a concern. He’s 5’ 8” tall. Every year he doesn’t need an intervention, we thank our stars while science advances. He had a dizzy spell this past fall, emergency room, followed by complete workup at CCMC, found nothing all is fine??? Life goes on!!
He played soccer for his high school team (4 years) and town basketball for many years, and loved every minute of it! He still gets cold after eating and forgets about swimming in a cold pool! Hands are always clammy and cold! Heart is always warm :-) He is able to speak Spanish fluently (and French), so push back if a speech therapist tells you that you can't raise a bilingual heart baby!
We will be forever grateful to surgeon Doctor Dennis Mello, to the many cardiologists and cardiology nurses for the care he got (and still gets) at CCMC 17+ years ago!
An enormous Thank you Lenore Cameron for your insight, vision and perseverance to start/ keep running this group! You have helped countless family’s hearts through this very long and never-ending journey of HOPE. THANK YOU!!!!!! GRACIAS!!!!!!
Story by Pablo's mom, Andrea - CONNECTICUT