Mia Vogel – Tetralogy of Fallot

Learn more about Mia's experience with Tetralogy of Fallout at Children's Hospital.

When Mia Vogel landed at Pittsburgh International Airport with her adoptive parents Mary and Matt on Jan. 2, 2011, she was a very lucky, but very sick little girl. Not quite 4 years old, Mia had already embarked on a big adventure—traveling overseas from an orphanage in Xi’an, China, to begin a new year and a new life in a new country. But she was about to have an even bigger adventure that would take place at the Heart Institute at UPMC Children's Hospital of Pittsburgh.

Throughout the overseas flight, Mia had been vomiting, having trouble breathing, and her skin looked blue. Not sure whether her reaction was exacerbated by confusion or worry about her new surroundings, or something more serious, her new parents immediately took her to their pediatrician. Found to be very dehydrated, Mia was referred to UPMC Children's where she was diagnosed with one of the most severe forms of the congenital heart defect known as tetralogy of Fallot, a condition characterized by low oxygen levels in the blood. Her disorder was causing cyanosis, or a bluish-purple color to the skin, and pulmonary atresia, a blockage of blood flow to the lungs.

When Mia arrived at UPMC Children’s, her condition was grave: Doctors initially thought that her condition was inoperable. But before sending her home with no hope, her lead physician assembled the team of Heart Institute doctors to review the results of her electrocardiograms, chest x-rays, echocardiograms, CT angiogram, and heart catheterization. The team designed a complex multi-stage treatment plan, which included a series of cardiac catheterizations and surgeries to repair and improve the blood flow to Mia’s lungs.

After four days in the hospital, Mia was sent home with her parents on aspirin and Lasix therapy to allow her to build some strength before her first surgery. Mia was placed on oxygen at home because her blood-oxygen saturation level was only 64 percent, and her skin was blue all of the time.

In March 2011, Victor Morell, MD, performed the first surgery to increase the blood flow to Mia’s lungs, installing a 12 mm Gore-Tex® shunt from her right ventricle to her pulmonary artery.

“She was pink right out of surgery,” Mary recalls. Although Mia had been very scared during the experience, mainly because of her still-limited English, she weathered the surgery well and had a quick recovery, leaving the hospital after only four days. “She was a real trouper,” says Mary.

In December 2011, Mia had another surgery—this time, a more complex open heart surgery in which Dr. Morell installed a bigger shunt and performed a unifocalization procedure to move misdirected vessels to the pulmonary artery to restore blood flow to Mia’s lungs. This surgery was rougher for Mia, Mary recalls.

“Mia remembered her last surgery and understood what was going on,” she says. “In addition, her lungs had been showing a reperfusion injury (because they were not used to getting blood flow), so she was given a paralytic drug and placed on a ventilator for three days to allow her lungs to heal without her trying to struggle against the breathing tube.”

After a nine-day inpatient stay, Mia was discharged and went home to her family.

Mia’s Next Stage in Care

Today, Mia continues to attend appointments at UPMC Children’s every six months with Jacqueline Kreutzer, MD, as her primary cardiologist.

“Dr. Kreutzer has been great to work with,” says Mia. “She explains everything thoroughly and makes me feel comfortable.”

Mia VogelMia just completed her freshman year of high school and enjoys life as a normal teenager. She likes spending time with her friends and is excited to start a new culinary arts program at school this fall.

Mia also attends Heart Camp each summer, a yearly overnight camp for kids with heart conditions. She is looking forward to working as a junior counselor there in 2023.

“For kids with heart conditions, I recommend going to Heart Camp,” says Mia. “Everyone there has been through a similar experience and has the same scars. It’s a great place to connect and relate with others.”

Both Mia and her family are thankful for the team at UPMC Children’s and the services they continue to provide.

“The overall experience with everyone at UPMC Children’s has been really good. The team is honestly amazing,” says Mia.

“As a parent, the staff is really accommodating,” says Mary. “They always ask if I need anything when I go and are attentive to the whole family.”

As Mia continues her journey with congenital heart disease, she and Mary offer support to those undergoing a similar experience.

“I’d say at first, it is really scary,” says Mia. “But after it happens, it’s not that big of a deal. Your family and friends will be there to support you and comfort you through it all.”

“To other parents, I recommend always asking questions,” says Mary. “In the beginning of Mia’s journey, I constantly asked questions. It’s important to understand and learn as much as possible so that you can be the best advocate for your child.”