Hey, I’m Miranda Hurd – also known as Lovemiranduh a content creator and LGBT+ advocate who was born with a rare chronic illness called Ventricular Septal Defect (Heart Condition). My passion is helping others make the most of their lives while helping people understand what it’s like for someone with a chronic illness.
My Story
“At her 30 day checkup, the doctor said her heartbeat sounded like “Niagara Falls” and that was not normal. We wound up going to St. Joseph’s Children’s Hospital in Tampa and she was diagnosed with multiple Ventricular Septal Defects and secondary pulmonic stenosis. 2 days before open heart surgery the surgeon said he could not do it because it will not help and she had about a 5-10% chance of surviving it. He said she had 7 more months left at the most – take her to Disney World, let her play and have fun.
Her cardiologist (Dr. Thomas C. Edwards) knew about a doctor (Dr. James Locke) who designed an experimental device (CardioSeal and CardioSeal II) but it wasn’t designed to fix the same type of holes and we may not get in the FDA trial program but he took her records to him at a conference at the Mayo Clinic in Minnesota. He came back and said we could get in the program but it would have to be fast and it would be done at Boston’s Children Hospital. I lobbied my military commanders, senators and representatives to make sure it happened. Her pediatrician, Colonel Mildred Calero, fought the Hospital commander at MacDill AFB (where I was stationed at the time) and my First Sergeant, Senior Master Sergeant Donna Becky Ritz “argued” with the Civil Engineer Commander so I could go with my daughter to Boston. My wife was almost 9 months pregnant with my second daughter and needed to get cleared to fly. The U.S. Air Force flew us on a C-9 “Nightingale” Aeromedical Evacuation Aircraft up to Boston.
I spent 45 days bedside praying with rooms at the Air Force Base, the hotel next door, the Parents’ Suites in ICU and a chair next to her bed, checking on my wife (who started having labor pains) at the Brigham and Women’s Hospital that was connected to Boston’s Children Hospital. We watched and prayed. She spent over 12 hours and she came out of surgery – alive. But we weren’t out of the water yet.
Miranda went several years following up with check-ups. However, in 2017 she started to have heart issues that was diagnosed as Afib. Her heart rate was hitting 130-140. Which lead to multiple ablation procedures and pacemaker being put in. Due to how her heart beats, the pacemaker was rejected shortly after being put in. After a few years of trying to manage her Afib episodes using medication, ablation procedures, and even as far as a mapping procedure where doctors purposely make scars inside the heart to prevent the electric current – the doctors determined some other options. Resulting in needing a second open-heart surgery on March 7, 2019, during her second open-heart they also moved her pacemaker. After a few years of recovery and maintaining her heart health, it was determined that her last option was a heart transplant. Until she has her heart transplant, she continues to manage her heart health while raising awareness by sharing her story online through multiple social platforms.
Besides her long medical history, she has a supportive family – Dad, Mom, and two younger sisters.
She had two episodes of partial heart block and one episode of complete heart block. In other words, her heart wouldn’t restart – either partially or at all. The devices were metal and affected the “electrical conduction system” in her heart. It was short-circuiting her heart. And even worse, her pulmonary artery wasn’t completely attached – they did a temporary fix and Dr. Locke will let the swelling go down but in 2 days she will need an open heart surgery to re-connect it to her heart. Dr. Locke brought in Dr. John Mayer to do the open heart surgery. After the surgery, they say it was a success but we need to watch her for a long time.
We are able to see her. I’m standing on her left side and she keeps moving her head to look at me. That’s odd. I stand on the other side and she looks at me fine. I stand on her left side again and realize that her left eye is buried in the pillow and she’s looking at me with only her right eye. Oh no! We call the doctor and he brings in a team of neurologists (no kidding, there was no where to stand with 4 “full-on” Neurologists, about 6 student Neurologists, her Cardiac surgeon, Dr. Locke and his crew) and all my wife and I could do was tell her “we are here honey” until they gave us the diagnosis. She had a minor stroke and we will have to see what it will affect, if anything. She had some issues but she has overcome those deficits because she wouldn’t let it beat her.
We spent the next 10 years just being careful and she didn’t like the fact that there were things that she could not do like other kids. Eventually, she understood. She went with me on her first roller coaster when she was about 13 and her first comment after we got off was “Can we go on it again?”” – James Hurd, This is Miranda’s “Miracle”…., Facebook
This is an illustration that Miranda created of the inside of her heart with some of her devices. To help show how different her heart is compared to others.
