This sweet 4 year old girl is being honored at our ‘Heart to Heart’ Gala this November and a portion of the proceeds will go to her family to assist in medical bills, travel expenses and any other needs they may have for their sweet heart warrior!
Tickets for this November 18th event are on sale now and can be purchased here! We hope you will join us!
There are also sponsorship options and an opportunity to place an ad in our event program. And of course, all in-kind donations are being accepted for our raffle and silent auction! Please email firstname.lastname@example.org to donate to this event!
Please visit our website to support this event or for more information.
This blog comes straight from the family….
We arrived at our 20-week ultrasound with an abundance of hope and optimism. We had trouble conceiving our second child and decided to wait until this milestone date to break the good news to her big sister. We even bought a new “soon-to-be-sister” t-shirt to mark the occasion. But the happiness was quickly replaced with fear, confusion and devastation when we learned that our precious child had a severe congenital heart defect. After a series of tests, ultrasounds, and many consultations with our cardiac team at Children’s Hospital of Pennsylvania, we learned that Harper had Double Outlet Right Ventricle, along with a large Ventricle Septal Defect and Pulmonary Stenosis, a rare combination that our experienced team of doctors had never confronted.
We needed to grieve the loss of the healthy child we had hoped for and rally behind her to ensure she would be given every chance to extract every bit of joy that life has to offer. We were armed for the fight with a loving group of friends and family, along with a world-class medical staff that provided the right combination of compassion and honesty.
We were told that Harper would be safe while she was in the womb, but would be fighting for her life upon her much-anticipated entrance into the world. And fight she did! She had her first open heart surgery at 10 days old. In her first 4 years of life she’s had 3 open-heart surgeries, 2 cardiac catheterizations, and a plethora of EKG’s, echocardiograms, and blood draws. She was tube fed for the first two years of her life, and although we are tube free now, it still remains a daily battle to keep her weight stable.
Currently we are experiencing a wonderful lull in Harper’s heart journey. She has no more planned surgeries at this time and she runs, laughs and plays like any other child. That being said, due to Harper’s unique anatomy, her cardiac team does not have a next “plan of attack” for her heart condition. Unfortunately, due to the large VSD (hole) in the center of Harper’s heart, they were unable to complete a bi-ventricular heart repair that would have allowed her heart to function as a healthy heart. Instead they performed a single ventricle repair, not an optimal situation.
What this means for Harper, based on the complexity of her heart defect, is that we do not know what her future has in store. There has been talk of a heart transplant in her teen years or possibly a new procedure could be discovered between now then that might work for Harper, but we don’t have a plan of action, which can be a bit nerve wracking as her parents. Worry, unfortunately, creeps in around every corner, as a parent of a CHD child. Will a cold or a fall turn into a hospital visit, will a cold pool be too much for her heart to handle, should we let her participate in pee-wee soccer or dance class, will her immune system be able to handle the germs in preschool?
All those worries and concerns aside, Harper has taught us to live every day to its fullest because tomorrow is never guaranteed, no matter who you are. We try our best not to let Harper’s heart defect define her and so far it hasn’t. Harper is strong, bright, energetic, and maybe even a little naughty too 😉
We are eternally grateful for the various organizations and safety nets that have helped our family through these difficult and challenging times.