At a routine prenatal ultrasound, Kierra was told her daughter, Evanna, had a major heart defect. She decided not to have an amniocentesis done because she was not going to terminate the pregnancy regardless of the results. As the months went on, doctors found several other indicators that pointed to Evanna having 22q11 Deletion- also known as DiGeorge syndrome. Genetic tests confirmed the diagnosis after her birth.
Two Major Diagnoses Make Baby Medically Fragile
“A lot of the complications are because of DiGeorge syndrome,” Kierra said. Shortly after Evanna was born, she needed open heart surgery. After the surgery, she developed another condition known as Tracheomalacia. Doctors couldn’t extubate her off the hospital ventilator. She had surgery to get a tracheostomy five months later. Evanna ended up spending 400 days in the hospital, 322 of those days were in the ICU.
The day Evanna got to go home seemed unreal. “Our whole medical team was nervous,” Kierra said. Her heart condition, Pulmonary Atresia, in addition to her critical airway make her very medically fragile. Evanna has been doing well and hasn’t had any long hospital admissions in the last year. “She has been progressing and stabilizing, and we’re actually just starting to wean her off the ventilator,” Kierra said.
Greatest Trials Can Also be Greatest Blessings
“She has been both our greatest blessing and our greatest trial,” Kierra said. When children have a diagnosis like DiGeorge syndrome, it can put a serious strain on a marriage. Kierra and her husband, however, have learned to rely on and strengthen each other.
Their strong relationship has helped them in their desire to add to their family as well. Kierra and her husband had hoped to have children close together but decided it would be best to wait until Evanna was home and stable before trying to get pregnant. They did become pregnant again but Kierra had a miscarriage at twelve-weeks. They were upset but, “when you go through a situation like we did with our daughter, your perspective changes greatly, and a miscarriage isn’t as devastating.” A few months later they became pregnant again and are excitedly waiting for the birth of their second child.
Unfortunately, because of Evanna’s fragile state, she hasn’t formed a connection or relationship with her extended family. This is especially hard on Kierra’s mom since she has great relationships with her other grandchildren. Kierra has found that challenges like this can end relationships or make them stronger. “For the most part, most of our family and friends have stuck around and have been a really great support for us,” Kierra said.
Words of Advice: Take it One Day at a Time
Kierra belongs to many support groups and even has a blog, theirvinefamilyblog.com, where she is constantly asked for advice. “Usually the advice I give is to take it one day at a time,” Kierra said. DiGeorge syndrome is a diagnosis where you just have to wait and see the severity of the complications. In Evanna’s case, her heart condition is terminal. They hope to meet with a doctor who specializes in hearts like Evanna’s. There is a surgery that may improve her quality of life but they are also prepared if her case is denied. Embracing every day enables Kierra to be grateful for the time she has with Evanna, no matter what happens.
When you are the parent of a special needs child, your life will be chaotic. In that chaos, you need to be able to find happiness. “One thing I’ve learned is that we have good years and bad years. Life is about surviving the bad years while learning and growing through them, and then enjoying the good years.”