Member Profiles
MADISON - HLHS
I gave birth to a beautiful, healthy looking little girl on April 28, 2000, I was 19. It was the best day of my life, I'll never forget the first time I held her and how she looked at me with her big beautiful eyes. She weighed 6lbs, 4oz. & was 19 1/2in., her apgar scores were 9,9. She only breastfed once (for about 10 mins), had no wet diapers & lost almost 3 oz. while we were in the hospital.
The day AFTER my husband and I took her home we had to take her to the ER because she was having breathing and eating problems. They immediately started poking her and hooking her up to monitors & running every test possible. After 4 hrs of what seemed like an eternity, we were giver her diagnosis....Hypoplastic Left Heart Syndrome or HLHS for short. HLHS is a congenital heart defect affecting only 2 in 10,000 babies per year. HLHS means the left ventricle of heart is underveloped or didn't form at all. The cause of it is not yet known & there is no cure. It is th! e worst, rarest and hardest to fix heart defect. We are told the oldest person living w/HLHS is 16.
Madison was transferred to a local hospital in Shreveport,LA where we met her cardiologist, one of Madison's many heroes. We were told if we hadn't taken her to the ER when we did she would have died 2-4 hrs later. Our options were 1)Compassionate Care - take the baby home & love her until she dies, 2)a series of 3 open heart surgeries all done before the age of 5, 3)Heart Transplant. Compassionate care was NOT an option for us. We knew God had given us this baby for a reason & were definitely going to give her a chance, so we chose the 3 surgeries. The surgeries do not 'fix' her heart, only help her live a longer life. Her kidneys had shut down almost completely while she was in heart failure so we had to wait until they got back almost completely normal, which was 5 days, before the hospital performing the surgery would accept her. This was the most horrible week of my life. All I could think was "What did we do to deserve this, why us?" We were told by our ultrasound tech while I was pregnant that she was perfectly healthy & she even said she saw all 4 chambers of the heart. Our little girl's body was now covered with tubes, needles and wires, there were beeping monitors everywhere & a machine was breathing for her.
Looking at her made my heart ache so badly, I will never be able to put those feelings into words. My husband & I decided to get on the internet one day that week & do some research. Fortunately, we found some hope. There were a few children out there that had the surgeries & were doing well....unfortunately, we learned it was uncommon in girls. On the 5th day of her journey she & I were flown by private jet to New Orleans where she'd have her surgeries, which is 5 hrs from our home & our supportive family. The staff that cared for her there were some of the best we will probably ever meet in her lifetime. I cannot say enough about their kindness & support. Her 1st open heart surge! ry was 10 hrs long. Her chest was left open for a week & it was finally closed the day before mother's day.....my first. She was in Pediatric Intensive Care Unit for almost 2 wks & in a normal room for 1 week. My husband was extremely supportive & able to be with us at the hospital the whole time. I do not think I would have survived without him by my side. Madison turned 1 month old the day before we took her home. Believe it or not, I was scared to bring my own baby home without the nurses & docs & monitors there 24/7. I thanked God for helping me make the decision before she was born to resign from work & be a full time mom. I checked on her every 10 mins to see if she was breathing. Eventually life got back to somewhat normal & I began to forget at times that she even had a heart problem. She had her 2nd open heart surgery at 6 mos. old and we were only there for 7 days. She learned to sit up by herself less than 1 month after that surgery. She said mama &
dada at 9 mos. & crawled and drank from a sippie cup at exactly 10 mos. old. She got her 1st tooth on my 2nd Mother's Day, at 12 1/2 mos. old. She took her 1st steps at 14 1/2 mos. & is nearly running now at 18 mos. She's learning 1 new word a day now. Most children w/HLHS have some sort of developmental delays, feeding tubes, & some brain damage, not Madison. Her last surgery is yet to be determined & right now she is living life to the fullest & you'd never
know she has a heart defect just by looking at her. She is the happiest little girl and absolutely LOVES to dance & give lots of hugs & kisses. She has taught me not to take one thing in life for granted, because you never know when you will lose it. She is the light of my life, my gift from God, and I thank Him for choosing ME to be her mom. I love her with all my heart and more. I'm not happy that she has a heart defect, but I do not regret one thing that has happened...I would do it all over again in a HEARTBEAT! Madison would not be who she is without her special heart. She m! akes each day beautiful even if it is stormy outside. She is a true miracle, and my little angel on earth.
Her father & I will forever be grateful for the people who have cared for Madison. Dr. Davis, Dr. Heragu, Dr. Manchandia, Dr. Willis, Dr. Roca, Dr. Lucas, Emilie, PICU nurses of Ochsner's, Debra, Alison, ER of Minden Med. Ctr., WK South NICU....THANK YOU ALL SO MUCH! If it weren't for you all, Madison wouldn't be where she is today. We will never forget you & what you've done for our little girl. You will always be Madison's Heroes. We love you & God Bless you!
JR, Crystal, & Madison Cutchall
P.S.
If anyone would like to contact me my email address is CPerrym@aol.com or you can send Madison email at Maddysheart2000@aol.com.
If you or someone you know has a congenital heart defect please look into www.littlehearts.net. It is a non-profit organization, founded by a mother to an HLHS child, to offer support & information about congenital heart defects. There is parent matching for parents of kids w/the same defect, a wonderful email group & more.
Join Madison and the rest of us in the Heart Disease Forum:
