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.

Celebrating Life with Riley - National Donate Life Month

Riley was our first born. We thought he was a perfectly healthy baby boy. At his 15 month well child checkup he had an ear infection and I took him back a week later to make sure it had cleared up. During that appointment while listening to Riley’s heart the doctor said she heard something unusual and wanted another doctor to have a listen. Then another doctor was brought in to listen. They told me his heart beat was not sounding normal and wanted us to take him to a cardiologist to be safe. I was immediately worried but they assured me it was probably nothing but better to be safe than sorry. We had no heart conditions in our family that we knew of, especially nothing in children. 

So the following week my husband and I took Riley to see cardiologist Dr. Bezold. They did an EKG, echo and chest x-ray. And at the end of those tests, the doctor and nurse came in and said they had some very serious news to give us. The doctor said Riley had Restrictive Cardiomyopathy and there was no medications or surgeries available to treat this specific heart condition and that his only chance for survival was a heart transplant. He told us he had maybe two years to live without a new heart. He said he was shocked Riley wasn’t really sick and in the hospital already. For reasons we don’t know, Riley always looked and acted like he was a perfectly healthy baby boy. We got two more opinions after his diagnosis and all three hospitals told us the same thing. We listed him on the transplant list at Cincinnati Children’s Hospital where he received his new heart ten days later at the age of 18 months old. We were fortunate to not ever see our son seriously ill before his transplant but it also made the whole thing a lot harder to believe and understand. We have had our ups and downs over the past 14 years, his next anniversary is coming up this month on the 28th, it will be 15 years post heart transplant and Riley is doing amazing! He just turned 16 and got his driver's permit! We are so blessed to still have him and are thankful for his donor family everyday. 

After his transplant we did genetic testing and found out Riley’s dad Nathan has Hypertrophic cardiomyopathy and he started medication and had an ICD and pacemaker put in.