Celebrating Life with Story - National Donate Life Month

Our daughter, Story, was diagnosed prenatally with a severe congenital heart defect known as an unbalanced AVSD and HLHS. We were told she would have to have a series of three heart surgeries within the first few years of life.

She was born on October 28, 2013. She was transported to Nationwide Children’s Hospital shortly after her birth so she could be monitored. She had her first heart surgery when she was four days old. She struggled with feeding tremendously afterwards but was able to come home a few weeks later. We were sent home with a scale, and a pulse ox and had weekly meetings with her doctors so we could monitor her weight and oxygen levels so the doctors could determine when her second heart surgery would be.

She was in and out of the hospital for various issues over the next several months. She had her second heart surgery when she was five months old. It was such a scary time and struggled with breathing and coming off of oxygen afterwards, but thankfully was able to come home a couple of weeks later. We thought that things would slowly return to normal and she wouldn’t have to have her third surgery until she was a few years old. Things quickly changed a month after her second surgery and we had to be airlifted back to the hospital because Story was in severe heart failure. The doctors said there was nothing else they could do and they thought a heart transplant would be the only option. We were shocked and scared. Story was listed on the top of the transplant list.

During the waiting Story would throw up several times a day, and had to have a G-tube placed. She was hooked up to IV medicines and monitors and we spent the Summer in the hospital not knowing what the future held. We hoped she would receive her heart in time. Her miracle came 6 weeks and 3 days after being listed. It was a roller coaster of emotions; we were overjoyed Story was getting her new heart but our hearts ached for the donor family. I couldn’t believe it when I seen a whole heart on the screens during her first echocardiogram after her transplant. I still feel that way during her checkups she has every three months. I still can’t believe that another child’s heart is beating inside of her little chest.

Story has had her new heart for 6 1/2 years now. She has been able to do so many things that she wouldn’t have been able to do without organ donation. We thank Jesus everyday for her new heart and the choice the donor family made.