Olivia, Tracheomalacia

Olivia Rose Gorman was born a healthy little girl on September 12, 2015 at Samaritan Medical Center. We were discharged and two days later our life turned upside down. We went to her newborn check-up and everything was fine until her oxygen level dropped during her appointment and she became unresponsive. In a blink of an eye all I can remember is sitting in the back of the ambulance heading to Syracuse to the children’s hospital. From that moment on her medical life has been a roller coaster.

After multiple tests, CT scans, MRI’s, and Bronchoscopies, Olivia was diagnosed with a rare heart condition called right aortic arch with aberrant left subclavian. After being in the hospital the first two weeks of her life, we saw a pediatric cardiologist at Upstate Hospital and a pediatric ENT and from there on we would go to quarterly appointments to get Olivia checked out. After receiving the news about Olivia‘s rare heart conditions, we did not know where life would take us or how her life would be. We just took it day by day.

In June 2017, Olivia had her first open heart surgery at Upstate hospital by Dr. George Alfieris from Rochester. Her surgery went great, she was healing beautifully and  her scar was barely noticeable. In the fall of 2017, my husband, her father, deployed to Korea and the children and I move back home for a few months to Pennsylvania and that is where she started to get sick a lot more again. She had a lot of hospital stays and ended up having another surgery there. She was being seen by the Children’s Hospital of Pennsylvania, and they determined that she had a restrictive airway, or in doctor’s terms it’s called tracheomalacia.

Olivia has severe asthma. She takes daily inhalers and nebulizer treatments and steroids. She is only seven years old and she cannot live a normal seven year old life. She has restrictions on going outside if it’s above 80° or below 40° and living in Upstate New York State that is very hard for her during the winter time. The smallest cold symptoms to someone normal turns into something worse for her, and she’s now had many cases of pneumonia, bronchitis and croup. I lost count on how many times Olivia has been sick, hospitalized or had to have surgery for something.

Here we are now in 2023, still fighting for her. She recently had another surgery in July where her doctors at Upstate recommended she be seen by a pediatric airway specialist in Cincinnati, Ohio. Essentially, they would do another major surgery where they would put a stent in her airway to open it up. Right now, every time she is sick, her lungs are getting worse. We are still struggling with insurance to cover her to be seen out of state. We are so lucky to be involved and get help from the Children’s Miracle Network with guidance and support.

Despite everything Olivia has been through, she still smiles, loves to sing and make art. We are so blessed to have her in our life.

The Gorman Family