Tetralogy of Fallot: Matthew's Story

Before open heart surgery at The Children's Hospital of Philadelphia, an anesthesiologist comes to the bedside, speaks with the parents and escorts the baby to the operating room.

Stephanie will never forget that moment saying goodbye to her 2-month-old son, whom she and her husband had brought from their home in New Mexico.

"I lost it," she recalls. "I remember his nurse trying to comfort me and telling me she really believed he was in the best hands. She said, 'If I didn't believe that I wouldn't be here.' So I thought — if you believe that, I have to believe that."

Today, Matthew is a thriving 7-year-old. And his mom is a CHOP Cardiac Center nurse: She was so impressed by the team that treated her son she decided to join it.

The journey: TOF diagnosis

matthew The family's journey began in September 2003, when Stephanie had twin boys, prematurely, at a local hospital near their home in Las Cruces.

Doctors in the neonatal intensive care unit noticed a heart murmur in Matthew. After echocardiography, they diagnosed him with tetralogy of Fallot (TOF), a congenital heart defect that is typically defined by a combination of four anatomical abnormalities of the heart.

When Stephanie and her husband, Tony, were told Matthew would need open heart surgery, "Our whole world felt like it was caving in," she recalls.

Decision to come to CHOP

Stephanie's stepmother, a counselor at CHOP for the hearing impaired, suggested that they bring Matthew to CHOP.

The team of pediatric heart surgeons at CHOP have much more experience with infants with congenital heart defects, like TOF, than at smaller hospitals.

After the family sent Matthew's medical records to the Cardiac Center, they traveled to Philadelphia.

Tetralogy of Fallot surgery

On Nov. 20, Matthew headed into surgery.

Before the procedure, Stephanie and Tony met with Thomas Spray, MD, chief of Cardiothoracic Surgery.

"It's terrifying when you're meeting the surgeon who is going to operate on your son's heart," she recalls. "But it was calming to hear Dr. Spray explain the procedure and what had to be done and how it would work."

Stephanie will never forget the kindness of Nancy-Ann Bitterman, BSN, RN, the nurse who was Matthew's main care provider in the Cardiac Intensive Care Unit (CICU) and who provided updates to the family during Matt's tetralogy of Fallot surgery.

The surgery went well. Because of the medical equipment required after open heart surgery, such as a chest tube, pacemaker wire and arterial lines, it was three days before Matthew's parents could hold him.

"I remember not wanting to let him go," Stephanie says.

Going home after open heart surgery

Matthew was in the Hospital for a week after surgery. He, his parents and his twin and two other brothers then stayed for a month in Philadelphia at his grandparents'.

"We were able to celebrate Thanksgiving with him at home," Stephanie says, "and that was one of the best Thanksgivings we had."

After returning to New Mexico, Matthew was required to see a cardiologist at least two times a year. Meanwhile, his mother, previously an ultrasound technician, returned to school.

"The way that the team was, the nurse and all of them, they're so compassionate," she says. "The feeling was — this isn't just a job to anyone. They really feel for these kids. I told my husband, I want to go to nursing school. The plan was to come back to CHOP and work here. That was my goal."

A cardiac nursing career at CHOP

After four years of school, Stephanie interviewed at the Cardiac Center, and in May 2008, she began working as a nurse in the Cardiac Intensive Care Unit. Her husband found a job in Philadelphia, and the family relocated.

Stephanie doesn't talk about her own experience with families, but she does let it inform her work.

"I do understand what they're going through," she says. "You feel like your parenthood is taken away because the nurses are doing everything, because they have to. I try to let them be as involved as possible."

For example, she will ask a mom to help change the bed sheets or a diaper.

Stephanie also never tells parents that everything is going to be OK, because sometimes it's not.

"I encourage them to focus on the moment," she says. "To say, right now, he's stable."

A better chance at a normal life

Matthew visits the Cardiac Center once a year for a checkup and will require care by a cardiologist for the rest of his life. Additional surgery may be required.

"We take it year by year," his mom says, "but for now, he does everything a normal little 7-year-old would do."

"He jumps, runs, plays baseball, swims with a team and just last summer learned to ride his bike without training wheels! He sits and has little conversations with you. If you point to the scar and ask, 'What happened here?' he'll tell you that the doctor had to fix his heart."

I come home every day and I thank the doctors and nurse that took care of him. They gave him the hope that he can live a normal life.

Originally posted: June 2009
Updated: September 2013

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