Saving a Brave Hearted Baby

Aliyah's congenital heart defect confirmed by a fetal echocardiogram before birth.

After her 20-week pregnancy checkup, Victoria Robbins-Martinez was given news about her unborn baby she was not prepared to hear. During her routine ultrasound, Victoria’s obstetrician was concerned that her unborn child may have a serious heart condition and directed her to Thomas N. Tabb, M.D., a maternal-fetal medicine specialist with Norton Children’s Hospital.

Once Dr. Tabb examined Victoria, he ordered a fetal echocardiogram. This is a test performed during the second trimester of pregnancy, usually between 18 and 24 weeks, that uses sound waves to evaluate the baby’s heart for defects.

The fetal echocardiogram was performed by Brian J. Holland, M.D., pediatric cardiologist at the Norton Children’s Hospital Heart Center.

“What we found during the echocardiogram was that Victoria’s baby had only one pumping chamber, while most of us have two pumping chambers,” Dr. Holland said. “This was a very rare and complex case, and Victoria’s baby was going to have to undergo surgery upon birth in order to survive.”

Being born with this type of single ventricle defect causes the heart to have to work twice as hard to pump enough blood to keep the lungs and the rest of the body functioning.

“When I found out my baby had such a serious heart defect, I was devastated,” Victoria said. “I was very emotional because I had already lost a child during a stillbirth at nine months.”

With three other children — a 9-year-old, a 6-year-old and a 2-year-old — Victoria and her husband had a lot to think about and prepare for during the months leading up to the birth.

Once the fetal echocardiogram images were obtained, Dr. Holland and his team reviewed them with Erle H. Austin III, M.D., pediatric cardiovascular surgeon with Norton Children’s Hospital and U of L Physicians. Dr. Austin would perform Victoria’s baby’s first surgery after birth.

On Oct. 5, 2013, at 4 p.m., 39 weeks into her pregnancy, Victoria gave birth to her daughter, Aliyah, by a cesarean section performed by Dr. Tabb at Norton Hospital.

Aliyah was immediately taken to the Norton Children’s Hospital neonatal intensive care unit (NICU), attached by pedway to Norton Hospital, where she was monitored and cared for until she was ready for surgery.

At just 1 week old, Aliyah had her first surgery to correct the single ventricle defect. The surgery took Dr. Austin and his team approximately 11 hours.

“It felt like a lifetime,” Victoria said.

“This operation was performed to make sure Aliyah had adequate blood flow to her lungs,” Dr. Austin said. “Without it she would have died. With it (and additional planned procedures) she will be able to lead a relatively normal life.”

Now 10 months old, one would never know Aliyah had been through so much at such a young age.

“She has the ‘zipper’ scar on her chest to always remind us how brave of a heart she has,” Victoria said.

Doctors believe Aliyah’s prognosis is good, however she will need to endure one more surgery called a Fontan procedure. The Fontan surgery will reroute blood flow from the right atrium to the pulmonary arteries, allowing Aliyah to live as much of a normal and active lifestyle as possible.

“Aliyah’s a very happy baby for everything she’s been through,” Victoria said. “All the goals she was supposed to achieve, she’s achieving slowly, but we are very blessed and elated with her progress.”

About the Norton Children’s Hospital Heart Center

The Norton Children’s Hospital Heart Center is home to some of the most advanced diagnostic, surgical and interventional procedures available to diagnose and treat congenital heart defects in both children and adults. Throughout diagnosis and treatment, patients and families remain the focus of the center’s multidisciplinary medical efforts.

Services offered at the Congenital Heart Center include:

For more information on the Congenital Heart Center, visit NortonChildrensHospital.com/HeartCenter or call (502) 629-KIDS.


Do you know a brave heart?

Has your child been diagnosed with a congenital heart defect?

Join other families like you, make new friends, get support and raise awareness through the Brave Hearts support group. For more information, visit NortonChildrensHospital.com/BraveHearts.


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