Living With Conditions It's His Heart

My grandson Lucas was born 12-25-14, the first Christmas baby born at our local hospital.  He was sent home shortly after his birth with no issues. After coming home, my daughter-in-law knew something wasn't right.  Lucas wasn't feeding and was very lethargic. She was able to get a doctor appointment for the next day but opted to not wait and they went back to the hospital right away.  After a few hours a pulse ox on his opposite hand & foot was 'off' and raised the red flag that got him transferred (with a misdiagnosis of pneumonia) to AI DuPont Children's Hospital where he was diagnosed with 7 congenital heart defects.  He underwent his first open heart surgery (the Norwood) when he was 11 days old and was finally able to come home shortly before Easter of 2015. Currently he has had his 2nd open heart surgery (the Upper Glenn) at 7 months of age & will be having the last (the Fontan) probably later this year.  He also has GERD and late dumping syndrome. He’s had the Nissen Fundoplication procedure and is still on a feeding tube. In spite of everything, he is the happiest most loving little heart warrior.

Hearing my son tell me "it's his heart" was beyond overwhelming.  I never heard of CHD or Pulse Oximetry Screening until his diagnosis.  I can't understand why. Learning what I have since then, all the signs were there and were missed.  If it weren't for the pulse ox finding he may not have survived. Why is there no awareness for CHDs or Pulse Ox Screening?  I've since worked diligently to change that. My community Facebook page shares Lucas's story and helps to educate/advocate awareness & has generated over 8750 likes and continues to grow every day.  I run an annual Pulse Ox campaign called "One Foot at a Time" that stresses the importance of this non-invasive screening that saved my grandson's life. I work with our local pregnancy center, 2 local hospitals, 2 major hospitals specializing in pediatric cardiology & have recently joined Mended Little Hearts of Delaware as their CHD Awareness Coordinator.

I never dreamed I'd advocate so hard for something that I didn't learn about until Lucas ended up in a cardiac unit.  Thanks to Baby’s First Test for helping me to get this info out with their amazing screening cards! Learn the facts & spread the word!!

By Billy Werner

Find more information about Critical Congenital Heart Disease

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