Meet Emily

Child's Diagnosis: CoArctation of Aorta, Bicuspid Aortic Valve 

Has Kerrington’s Heart impacted your journey? If so, how?: 

Kerrington’s Heart, Inc. was a resource shared by Emily’s cardiology office at the time of her CHD diagnosis.  I reached out to KHI and they have been a support to our whole family throughout our entire heart journey – diagnosis, surgery, recovery and everyday life.  KHI has also provided our family with education, care packages, and opportunities to connect to other CHD families through Mom’s Meetings and fun, family events throughout the year.  Having a child with heart issues is a lonely and scary experience, and I am forever grateful for all of the support Kerrington’s Heart has generously provided.      

What’s one thing you wish you’d been told at the beginning of your journey?: 

I’m not sure if there was anything specific that we wished we would have been told at the time of Emily’s diagnosis.  That said, I would encourage new families to reach out to available resources like Kerrington’s Heart, Inc. even if that is out of your comfort zone.  One of our biggest blessings has been not having to walk this journey alone.   

Please share a little bit about your story: 

Emily was 8-years-old when her CHDs were discovered.  She’s had one open heart surgery at this point and is healthy and thriving.  While she has some physical restrictions, she participates in dance, horseback riding and swimming.  She loves participating in the Wild Hearts Fun Run 5K, Cookies with Santa and the Camp for Courageous Kids each year all made possible by Kerrington’s Heart.   She is a true warrior.   

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.