A Troubled Pregnancy
Bela’s life was highly monitored even before she was born. Eighteen weeks into Avery Milne’s pregnancy, a routine ultrasound caused concern. Avery was referred for a Level II ultrasound and her fears were confirmed: Bela, the precious baby she was carrying, likely had hypoplastic left heart syndrome.
Hypoplastic left heart syndrome (HLHS) is a combination of several abnormalities of the heart and great blood vessels. It is a congenital syndrome, meaning that the heart defects occur due to abnormal underdevelopment of sections of the fetal heart during the first 8 weeks of pregnancy. The left side of the heart does not form completely and thus cannot pump blood effectively. A baby with HLHS will not live long without surgical intervention.
With only one pumping chamber in her heart, Bela’s condition was severe. Avery was also informed her baby had the chromosomal abnormality Turner’s syndrome. She was told her that her pregnancy would likely not make it to full-term
“We had no hope…in my mind, I was already trying to move on and not get attached,” said Avery Milne, mother of Bela.
Fortunately, the ultrasound center referred Avery to the Valley’s leading fetal heart specialists, where she found comfort and assurance. After running several echocardiograms and cardiac catheterization procedures, Bela’s diagnosis was confirmed by our fetal heart team while she was still in utero.
From the beginning, Avery felt comforted by John Nigro, MD, Section Chief of Cardiothoracic Surgery at the Phoenix Children’s Heart Center. He told Avery all the risks, but also told her if baby Bela survived the pregnancy, she would be in good hands – the first good news she had heard since the diagnosis. Avery continued monthly fetal check-ups with Dr. Nigro to monitor her pregnancy and Bela's progress.
A Miracle in the Making
Despite all the odds stacked against her, Bela was born full-term, which came as a miraculous surprise. After birth, baby Bela went immediately to the Pediatric Intensive Care Unit to be monitored by the Children’s Heart Center team.
Only seven days after she was born, Bela had her first open-heart surgery. The Norwood and Glenn procedure was used, a new hybrid surgery reserved for extremely high risk patients where the cardiac surgeon and interventional cardiologist work side-by-side. Her first surgery allowed Bela to live outside her mother’s womb by mimicking the blood circulation pattern during pregnancy without having to rely on a heart-lung bypass machine. Bela and family went home for recovery but she was monitored carefully.
The next six months were not easy for Bela to say the least. She was re-admitted into the hospital numerous times for double pneumonia, heart failure and an incision infection. Through each of these challenges, Beth Rumack, a nurse practitioner who cared for Bela, was available day and night to answer any questions Avery had.
“That was my life-line. I called Beth several times a week during those six months of Bela’s life,” said Avery.
All of that led to her second surgery when she was six months old. This less-invasive but complicated surgery was intense because it was crucial in allowing Bela to live with only one pumping chamber. Throughout her first year of life, Bela was hospitalized for a total of seven months. She had a very challenging course after her second surgery but Bela has defied all odds and continued to amaze everybody.
Looking back, Avery credits the team at Phoenix Children’s and other understanding parents she met while in the operating room, with lifting her spirit through those difficult times.
“You have to be confident in who’s taking care of your child, and be confident in the team that’s taking care of them,” said Avery. “I would not change a thing. We have been extremely pleased with Dr. Nigro and his team for the care Bela has received.”
Now three years old, Bela is a graduate of the hospital’s Complex Congenital Heart Infant Evaluation and Follow-Up Program, otherwise known as CHIEF, a high-risk surveillance program designed to monitor infants born with heart conditions that frequently require a series of heart surgeries. It allows our team to keep a close watch on infants who are well enough to go home after surgery, but who are still too fragile for general pediatric care which treats patients with congential heart defects.
Bela can eat on her own and is progressing along beautifully. As an active and smart little girl, she is about to start preschool in the fall. People are always telling Avery they would never know anything is wrong with Bela because she is so full of energy.
Bela is scheduled for her third and likely final surgery in April of 2012 and the team at the Phoenix Children’s Heart Center continues to monitor her.