written by Heart Hero Lauren

Hi! I’m Lauren and I’m 11 years old. I just received my 2nd heart transplant on my 11th birthday-March 11, 2015. I was born with Hypoplastic Left Heart Syndrome and was treated at Arkansas Children’s Hospital. Helping a child live with HLHS requires a three-stage surgery usually done over the first year and a half of life. I had the first stage (Norwood) at one month old and it went well.

At just a few months old at a checkup, my doctor saw that my heart was getting weaker. She wanted me to have a heart cath to see if I was ready for the second stage. Not only was I not ready, but the doctors discovered what they thought was another devastating heart defect that I could not live with. It appeared to them that my descending aorta and the arteries branching off were way too small to almost nonexistent.  My parents were told to enjoy the time I had left and to prepare for end of life care. However, my main cardiologist did not give up on me. She started me on new meds and had a CT scan scheduled so a radiologist could get a better look. Seven weeks after being told I had this other defect, the doctors discovered the descending aorta and arteries were small but I could live with it. You can imagine the joy my parents felt that day!

My heart was still getting weaker and my body was still not ready for the second stage of surgery, called the bi-directional Glenn, so the doctors decided on a transplant. I was listed, waiting at home at eight months old. At 11 months old, a routine echo showed my heart function had improved. So, again, my doctor wanted another cath done. This time it showed I was ready for the Glenn procedure. At 15 months old, I had the second stage of the repair. My little body did not like the new flow and things were very scary for a few weeks. But, I turned around and got better. My doctor decided against the third stage of surgery (Fontan surgery) because of how badly the second had went. She wanted to see just how long my amazing little heart would last.

So, for the next several years normal sats for me was anywhere between 75-80. My nails and lips were blue, I tired easily, but I never noticed – it was just how I’d always felt. During a checkup when I was eight, the echo showed my heart function had decreased significantly. The doctor took me down to the playroom while she told my mom I needed a new heart. It wasn’t what she was expecting and she so dreaded telling the rest of the family and especially me. But I blew my family away when they told me! I was excited that I would be able to run and play like a normal kid! In July, 2012, I was listed again as a status 2-waiting at home. My family, friends, and community had a huge fundraiser and I even had a day declared in my name – September 15 – Lauren Reynolds Day.

On October 9, 2012, a blood clot put me in the hospital for the duration of my wait. The good news was – I was moved to a status 1A at the top of the list. The night of October 17, 2012, my heart really started failing. I was given medicine to make it stop racing. An echo showed it was barely beating. So the doctors met with my parents and told them I needed to be placed on ECMO-which is basically life support-until I received my new heart.

Five days later, on October 21, 2012, I received my first gift of life. The recovery went pretty well considering how sick I was. On November 14th, 2012, I was able to come home. I felt amazing! I had never had this much energy before. I could not wait to try all the things I had missed out on! I played soccer, took gymnastics, outplayed all of my friends! Other than doctor appointments and heart caths-my life was pretty much normal for once.

I had my annual cath/biopsy (my 16th one) on December 17, 2014. Unfortunately, it showed severe coronary artery disease. The doctors don’t know why some transplanted hearts get this-they’re starting to believe it’s a form of rejection. Since the disease was so severe, I was listed as a 1A once again but I got to wait at home. The doctors felt (I didn’t find this out until after I got my heart!) that if I had a heart attack, it wouldn’t matter if I was at home or in the hospital-there would be nothing they could do. How blessed am I that on March 10, 2015, the day before my birthday-we got the call my parents had so anxiously been waiting on….they had a heart for me! We drove up to the hospital and were told it would be early the next morning before I went back to the OR. So, they put us in a room and all of my family surrounded me while I opened my birthday gifts.

I recovered extremely well. I was able to come home just nine days post-transplant, which is very uncommon. And, none of my doctors had ever had a patient receive their heart on their birthday– the best birthday present a person could receive.
I’m home now and doing great! I’ll never be able to repay the two families that chose to donate life on the worst day of theirs. My first donor helped me get strong and grow. My second-well, I know this is it– this is my forever heart.

April is National Donate Life Month.  For more information on giving the gift of life, please visit Donate Life America and become an organ and tissue donor.

Follow Lauren’s Heart on Facebook and keep up with her post-transplant activities!