When she was nearly halfway through her first pregnancy, Melanie Letzer had a life-changing ultrasound exam.

The Ellicott City resident and her husband, Jack, had long anticipated the routine test that would reveal the sex of their 19-week-old fetus. The pair intently watched a monitor as a technician slid the transducer over Melanie's expanding belly.

"But when she kept circling around the heart, I knew something was wrong," said Melanie, who was 32 at the time. Unfortunately, the expectant mom's instincts were right on target.

The couple was told they were expecting a boy, but their joy was short-lived. They learned their fetus had a congenital heart defect, which means the heart didn't develop properly.

And now, as Congenital Heart Defect Awareness Week is underway, the Letzers are sharing their story, hoping to inform and inspire other families who must face similar heart-wrenching news.

Bad news, good news

The Letzers also learned that day in April 2005 that their fetus' condition carried with it an increased risk of Down Syndrome. Melanie's obstetrician recommended amniocentesis, a test that uses a sample of amniotic fluid from the uterus to check the developing baby's chromosomes.

"We were sort of shell-shocked," recalled Melanie, who is a nurse. "The fun of pregnancy was ruined but we felt blessed to find out early."

During the outpatient surgical procedure, the couple again viewed a screen and saw their fetus vigorously kicking at the long needle as it entered Melanie's abdomen.

"We believed that (response) was a metaphor for his strong personality," said Jack, an engineer. The couple took solace in the thought that their son was a fighter, something he would surely need to be.

"Fortunately, there were no chromosomal abnormalities," Melanie said. "That meant Jack and I could focus entirely on our son's heart."

Spreading awareness

"Congenital heart defects are the number one birth defect," said Melanie, repeating what the couple's research had long ago uncovered. "Every 15 minutes a child is born with one."

According to the Web site of the American Heart Association, 36,000 babies are born with CHD each year, and anyone can have a child with a congenital heart defect. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined, the AHA reports.

Mona Barmash, CEO of the nationwide Congenital Heart Information Network, noted that unborn babies are not routinely screened for CHD, leaving many parents stunned to learn of their newborn's heart defect at birth.

"This couple was fortunate that doctors caught it early so they could prepare," said Barmash, whose 27-year-old son was declared in critical condition after delivery. "It can be a lot more traumatic than most people realize."

Each year CHIN sponsors Congenital Heart Defect Awareness Week across the country as close to Valentine's Day as possible.

Noting that she and her husband are normally very private people, Melanie said this symbolic week has spurred their desire to give hope to other families with a CHD diagnosis, who may be unsure if they can meet the challenges that lie ahead.

A detailed diagnosis

After the amniocentesis results were in, the Letzers were sent to Johns Hopkins Hospital, in Baltimore, for further diagnosis of their unborn son's birth defect.

After weighing two possibilities, physicians settled on a cluster of complex-sounding medical terminologies -- Tetralogy of Fallot with Pulmonary Atresia and Multiple Aorto-Pulmonary Collateral Arteries. Combined together, these terms meant the heart had four anatomical defects, there was no connection between the right ventricle and the central pulmonary artery, and there were poorly formed arteries carrying blood to the lungs.

"On a spectrum of severity, his condition was up there," Jack said.

The couple threw themselves into gathering information and researching their hospital options since doctors said heart surgery was a certainty soon after birth. They chose Children's Hospital of Philadelphia, in part because of its cardiac intensive care unit.

When the Letzers arrived in Pennsylvania on Aug. 5, 2005, for Melanie's 36-week check-up, they received unnerving news: there was no longer any amniotic fluid in the uterus. And as if that weren't enough, the fetus was in breech position with his feet first instead of his head.

For safety's sake, the couple was told the baby would have to be delivered by Caesarean section and the surgery would have to take place immediately.

Preparing for surgery

The Letzers were able to briefly hold Freddie's tiny little finger before he was whisked off to the cardiac intensive care unit to be closely monitored. He weighed 6 pounds, 6 ounces.

More than four months after he was born -- after augmenting breastfeeding with formula and then supplementing further with a nasal feeding tube -- he finally reached 10 pounds and was ready to withstand open-heart surgery. The procedure was set for Dec. 22, 2005.

"The delicate nature of the surgery on a heart the size of a walnut ... well, a lot of complications can occur," Jack said, recalling the couple's anxiety that day.

When the surgeon walked into the waiting room more than five hours later, he wore a big smile, Jack said. "And he spoke the five best words I have ever heard: 'He's fine. Everything went well.' "

After a week, the Letzers were able to take Freddie home, knowing their baby still had an uphill battle ahead of him.

Physical and occupational therapy, scans to check the amount of blood going to the lungs, visits to the emergency room for high fevers -- all that and more has taken place since he was discharged. But Freddie has flourished with the aid of dedicated physicians and the Howard County Infants and Toddlers program, Melanie said.

Just after Freddie turned 3 in 2008, he had a second surgery to replace the conduit between the ventricle and artery, a procedure that must be repeated as he grows.

Now 4, he is a thriving preschooler with no current restrictions on his activities. Two years ago, his sister, Alexandra, joined the household, and Freddie has handled that change well, Melanie said.

Dr. Reid Thompson, the family's pediatric cardiologist at Johns Hopkins Hospital, said his young patient is "very verbal and very curious" and he credited the Letzers for their attentiveness to their son.

"Jack and Melanie have done a good job raising him," agreed Dr. David Otto, Freddie's pediatrician at Catonsville Family Care Center. "His first year of life had a strong impact on Freddie, but he has come a long, long way."

"He's a wonderful child and he has that determination," Melanie said. "It's our hope that other families will realize that they can have the same outcome."

For more information on congenital heart defects go to www.heart.org or www.tchin.org.

---

user comments (2)

user dellabarbee says...

Thank you for the story about Freddie Letzer. I live in Louisiana and read it online. It was of great interest to me because I have a 34 year old daughter who was born with a similar condition. She had her first surgery at a day and a half old and since has had 3 others and is doing well. All of these were at Texas Children's Hospital in Houston, Texas. A good thing that is happening with congenital heart defects is the study of genetics. There are also now some surgeries being performed in utero, resulting in correction of the defect before the child is even born. Thank you again. Della Barbee

Posted 11:52 PM, 02.10.10 | Permalink

user larryletzer says...

Freddie Letzer is my nephew. I do so appreciate the paper and of course Jack and Melanie to opening their hearts to share this wonderful story about this very courageous and normal child to the world. I live half a country away from the rest of the Letzer Family, but this affected my family and me in a very significant way. Go Freddie Go. Love, Tio Larry

Posted 12:16 PM, 02.11.10 | Permalink