Miranda’s journey started in the womb. On December 7, 2006, after a two hour ultrasound, we were told that Miranda’s heart was not symmetrical, one side was smaller. She was diagnosed with hypoplastic left heart syndrome (HLHS). HLHS is a complex and rare congenital heart defect where the left side of the heart is critically underdeveloped. This causes the right side of the heart to both pump blood to the lungs and to the rest of the body. While advances in medicine have improved the outlook for babies born with Hypoplastic syndrome, treatments still include surgeries and often a heart transplant.
Miranda was born on March 5, 2007. On March 8th, she was taken in for her first open heart surgery (the Norwood Procedure). Due to complications during anesthetizing, the surgery had to be postponed a week while she recovered from Chemical pneumonia.
When she was six months old, weighing about 12 lbs., Miranda had her second open heart surgery (the Bi-directional Glenn). Miranda had difficulties eating, so at 17 months old, she had a Mic-key button (feeding tube) placed. We continued to offer food and feed her formula overnight.
When she was 4.5 years old, she had her third open heart surgery (the Fontan procedure). Miranda spent a month in the hospital after this procedure. Although this was stressful for us as her parents, Miranda has fond memories of someone bringing her a “fluffy” dress and painting her nails.
A year after having the Fontan procedure, she had her fenestration closed (a hole left open in one of her arteries to help her pressures in her body). After the fenestration was closed, Miranda began having headaches and vomiting. She was diagnosed with PLE (Protein Losing Enteropathy), which causes proteins to seep out of her blood stream into her body.
When she was six years old, they discovered that the opening created during the Norwood procedure had narrowed. This meant another open-heart surgery (an Atrial Septectomy). They placed a new fenestration to help relieve the pressures in her body.
Even with these surgeries, the pressures in her body have caused her liver to become enlarged. They call this a Fontan Liver as it is often a side effect of that surgery.
Throughout this medical journey we have worked hard to keep Miranda’s life as “normal” as possible. She has always been our “daredevil” child, often making our hearts skip a beat when she was running, jumping, and taking risks as if she had no medical issues.
Today Miranda is a typical teenager. Most people who meet Miranda have no idea that she has a heart condition. She enjoys spending time with her friends and dancing on her High School’s competitive dance team, Rhythmic Mode. She is very active in church activities in the church she grew up in (First Christian Church Pendleton), Young Life, and other church youth groups with her friends.
Miranda has been put onto the Heart Transplant list. She is at a 1b status, which is where she can wait at home for a heart. We have teamed up with the Children’s Organ Transplant Association (COTA) which helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.