Heart Stories

My Story: Leeanne White

When I was 5 months pregnant I was told that I was having a boy and that my son would be born with the most severe of congenital heart defects known as HLHS (Hypo-plastic Left Heart Syndrome). At the time Christian (my son) was so tiny and his heart was in really bad shape, their recommendation was towards terminating the pregnancy. They said he would probably be too sick to make it but that was NOT an option for me. My other options were comfort care with no intervention and he would surly die, heart transplant (there were no successful infant heart transplants in SC at that time), or the 3 step Norwood. I choose the Norwood and then put it into God's hands. Christian was born July 23, 2003. I never even got to see him until 2 a.m on the 24th. He was on a breathing machine and hooked up to many wires and alarms. The first time I held my precious baby boy was 5 days later, right before they took him for his first surgery. The surgeon told me his Aortic Valve was so small and that there were no guarantees. He pulled through like a fighter. It lasted 5 months and we had to go back for number 2. I believe I was even more scared this time. What was supposed to be a 2 week stay turned into over a month. He survived the open heart surgery, but then he caught RSV and about died. We went home just before Christmas, what a blessing! He was on oxygen at home for another month or so, but healed well - considering. The worst day of my life was February 11 2009. It was his 3rd surgery. It had been so long since having to deal with all of ins and outs of surgery day. On top of that, I had 5 years to fall in love with him, I was so scared to lose him. He pulled through. The only complication is his inability to gain weight, so on August 13th 2009 he went in for surgery to put in a g- tube. He has gained 2 lbs since then. Christian is a remarkable little boy, but the fact is he will always have half of a heart and always have to deal with everything a CHD throws at you. My boy: lives with half of a heart, but loves with a whole heart!

My Story: Hayden

Hayden was born Oct. 23, 2007 at 9:56 pm weighing 7 lbs 8.7 oz. Hayden was born with a diaphragmatic hernia and hypoplastic left heart syndrome. We were unaware of either of these birth defects prior to his birth. Hayden received his wings Oct 24, 2007 at 10:58 pm, living in this world for only 25 hours and 2 minutes.

Anticipation....

We arrived at the hopital Oct. 23, 2007 at 5:00 am to be induced. Our OB/GYN was going out of town and we decided to induce to avoid having to use another physican that we had never met. We filled out all the usual paper work, IV's were placed, and the Pitocin was started. We were on our way to meeting this little person that we had been waitng to meet for 38 weeks. I was in labor for 15 hours and was not progressing. Hayden was getting tired and so was I. His heart rate started dropping with each contraction, so our doctor decided it would be best for both Hayden and I to have a C-section.

CODE BLUE....

The nurses got me ready and wheeled to the OR for my C-section. I remember being really cold. As I was lying there, I heard someone say "he's out", but I keep waiting for him to cry. I heard one little moan and then the nurse said, "I am taking him to the nursery". The next words I heard ripped out my heart. Over the loud speaker "CODE BLUE NURSERY". The next thing I remember I was waking up and being taken back to my room. The on call pediatritcian came to talk to us once Hayden was stable. He explained that he had a diphragmatic hernia and that he was on the vent. He said that his blood gases were not good and they were going to send Hayden to the children's hospital to evaluate him for surgical intervention to repair the hernia. He mentioned that on the x-ray his heart was shifted to the right and that they were going to do an echo once he got to children's. At this point I still had hope. After 4-5 hours they finally let me see my little boy. I could not believe he was mine and so beautiful. I fell head over heels. Hayden was transported to children's by ambulance. The weather was too bad for the Angel One helicopter flight. A few hours after Hayden arrived at children's, I got a phone call from the cardiologist.