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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Eight Year Old Girl Writes Book About Her Open Heart Surgery

In December of 2016 my eight year old daughter (Hannah) had open heart surgery to repair an Atrial Septal defect. This event forever changed both of our lives. In fact Hannah and I have become armature congenital heart defect advocates (for congenital heart defects), and we are now writing a children’s book together about her open heart surgery experience. We named the book “Hannah’s Big Heart”, because Hannah is a very loving and selfless person with a big loving heart, and because Hannah’s heart is enlarged due Atrial Septal Defect. We hope that by sharing Hannah’s open heart surgery experience with other children it will reduce the stress and anxiety associated with heart surgery. It is our goal to help children feel more comfortable by offer a very (age appropriate) descriptive account of what a child (and their parents) can expect before, during, and after heart surgery. “Hannah’s Big Heart” will be written for children from ages 5 to 9 years old and will be 30 pages long, with about 1,500 words.

In November 2016 we had recently moved and so I had to take Hannah to a new pediatrician for her eight year old check-up. The doctor listened to Hannah’s heart she was concerned about a heart murmur that she detected and ordered an ultrasound. Hannah’s previous pediatricians told me that Hannah had a heart arrhythmia and that it would correct itself in a few years and that it was nothing to worry about. However, when the results from the ultrasound came back we were referred to a pediatric cardiologist. After another ultrasound and EKG was completed I was informed that Hannah had an Atrial Septal Defect (a hole in her heart) and that the hole was too large for her to be a candidate for the non-surgical catheter-based procedure and that she needed to have open heart surgery. Those words hit me very hard and for the next few weeks I lived in constant fear. The more research that I did the more afraid I became. However to my relief, Hannah’s Open heart surgery was flawless. After the surgery the surgeon told me that the hole in Hannah’s Heart was the size of a man’s thumb and that we added 30 years onto Hannah’s life by having the surgery done. Since then I have read multiple stories about children of all ages (who were undiagnosed) who simply collapsed and died from the same ASD heart defect that Hannah had. So I truly believe that Hannah’s new pedestrian (and the Godsend surgeon) saved my daughter’s life.

Hannah is making a spectacular recovery and her life is getting back to normal. She has returned to school and to her regular daily activities of playing with her little sister, singing, dancing, and watching (mostly Barbie themed) movies. Hannah has also been working with a local art teacher who is helping her illustrate “Hannah’s Big Heart”, and she has established the images for the cover, the back, as well as multiple pages of the book.

We are offering a sponsorship program to help us self-publish “Hannah’s Big Heart”. Sponsors will have their corporation’s name and logo in our book and we will be distributing the first 10K copies of our book free of charge to schools and libraries across the country, thus providing a wonderful marketing opportunity for our sponsors. We are also seeking private donations and we will list financial contributor’s names in our book.

Hannah was profile by RTV Channel 6 News (Indianapolis). https://youtu.be/C-4jwHBZs0Ehttps://youtu.be/C-4jwHBZs0E

To learn more about Hannah and “Hannah’s Big Heart” visit: https://about.me/hannahsbigheart