My daughter Madison was born on July 27, 1999 with hypoplastic left-heart syndrome.  My husband, my family, and I were made aware of her CHD issues when I had a sonogram while 17 weeks pregnant.  My doctor immediately referred me to a pediatric cardiologist who confirmed that my little girl had CHD. Needless to say, we were devastated! It was our first child and it never crossed my mind that she wouldn't be 100% healthy. Notice that I didn't say 100% perfect - she IS perfect...
 
At the time of Madison's diagnosis, there was very little known about HPLS and it was almost impossible to find information about it. Any information we did find via the internet was OLD information and nothing about hospitals, doctors or survival statistics. 
 
We were told about a procedure called the Norwood Procedure and that the doctor who invented it was currently living in Switzerland.  Turns out, this was incorrect information.  Through shear dumb-luck we discovered that a friend of ours knew that Dr. Norwood was at the A.I. DuPont Children's Hospital in Delaware and he was able to set up an appointment for us to go and see him. (Sometimes, it's not what you know, but WHO you know, right?)
 
When it came time for me to give birth, I had to do it in Delaware so that my daughter would be as close as possible to the DuPont Children's Hospital where her surgeries would take place. We lived in Delaware for two weeks before the birth, which meant that I couldn't even have my family around me, including my twin sister, at this scary time leading up to the birth. 
 
Madison's recovery after the first surgery was the hardest.  She simply wouldn't (or couldn't) drink from a bottle.  The feeding tube went in and for weeks it remained.  After about three weeks, Madison had healed well and was recovering nicely - with the exception of that eating thing.... Since that was all that was keeping us at the hospital, it made sense to free up the room for another family and go home - with the feeding tube. While taking a break from learning how to remove and replace the tube, we tried a bottle and Madison drank it all down...  Could she be on her way eating on her own?  Only time would tell! We kept the feeding tube out and continued to feed her with bottles and she was indeed "on her way"!
 
Madison had two more surgeries, the second at 6 months old.  This was supposed to be one of the hardest for the babies; however, Madison came through it with flying colors! We were told to expect to be at the hospital for at least two weeks after that second surgery.  Maddy had her surgery on Thursday and we were HOME on the following Monday - Valentine's Day.  The third surgery was that August - just after her first birthday.  I don't remember too much about that final surgery & recovery.  I tend to focus on the fact that we just wanted to get over that final hurdle and get on with living.
 
Madison is 9 years old now and to look at her, you'd never be able to tell that she has health issues. The only time she/we get questions is in the summer when people can see her scar and when asked she'll simply reply with a shrug "oh, that's from my heart surgeries".  That scar is her "badge of honor" - it's a testament to all we've been through to have her here with us today.  I couldn't imagine my life without her - her uniqueness, her spirit and her energy.
 
To some reading this, they might think that I am very blasé about this situation - please know that I am NOT.  I cannot live in fear for my daughter's life - what kind of life would that be for either of us?  My daughter is lucky enough to be alive, happy, and well adjusted.  She's also a little spoiled, but who can blame me?  Anyway, we're working on that!
 
We don't know what the future holds.  Hopefully, with additional research and development, CHD will become a thing of the past.  My family and I continue to take it one day at a time and thank God for each day we get to have with our amazing little girl.

 
Do you have a heart journey to share?  E-mail newsletter@itsmyheart.org  for more details.

Monthly Meeting