Daylen's story

Daylen Lee 

Born at St. Vincent Hospital in Indianapolis, Daylen was one of the babies born with hypoplastic left heart syndrome that year. His diagnosis began while in the womb, discovered at 25 weeks gestation. Like any other birth defect, doctor's weren't sure how severe his condition exactly was until after birth, but we did know one thing, his birth defect was 100% fatal if left untreated, and that wasn't an option to us.

(Picture courtesy of Charley Green, Project Acceptance Founder and photographer)

On 11-11-10, at 1:55 a.m., Daylen entered the world weighing 7 lbs 8 oz and was 19.5 inches long. He was purple in color, just as any heart baby would be, and was taken from us immediately into a stabalization room after delivery. We only caught a quick glimpse of him and was able to get two long distant pictures of him before they whisked him away from us. It took them 6 hours to stabalize him into the NICU with a central line in his groin in case of an emergency, and that was when we finally got to see him. 

(Picture courtesy of Amber Woods, daughter also has HLHS)

Daylen recieved an echo at a few days old and doctor's discovered he had an extra artery that was supplying him with more oxygen, they also discovered later that Daylen's PDA was not closing and instead was acting like an artery so that was an advantage for his heart function.

Daylen had his first surgery at 7 days old and was able to skip the norwood and a quick surgery done which included a central shunt placed instead. He did really great with it and was able to go home a week later! We had absolutely no hiccups after that. He was scheduled for his 2nd surgery at 4.5 months old. He had the hemi-fontan procedure done and also they patched the opening of his lungs because they were very narrow. Once again, he did wonderful with recovery and went home a week later!

Since his second open heart surgery, Daylen has has not had any emergency or life threatening incidents happen. He is scheduled for a heart cath this summer and then will under go his last surgery when he is 2.5 yrs old.

Daylen is one of the sweetest and flirtacious little boys you could ever meet and his story impacts so many lives locally and across the world. Please feel free to share his story and spread awareness as this birth defect is effects about 4 babies out of every 10,000 babies born in the U.S. and is the most severe heart defect known to man.

For more information, please feel free to browse the links I have added on this blog and please read the other blogs I have added of other little children fighting for their lives!

Thank you for reading :)

1 comment:

  1. Thanks for shareing your story! what a beautiful and strong boy you have!! Our son's have the same name but my Daylen was born on 10-11-10 I thought it was neat that they have the same name and born a month apart! congrats on your new baby! I will always keep your Daylen in my prayers!!