In August 2010, Greg and Becky Ortyl of Webster Groves were delighted to learn that they would soon welcome a new baby into their family.

Already parents to young Isla, they were eager for her to have a little brother or sister. At 20 weeks pregnant, Becky went to her doctor for an anatomy ultrasound appointment, looking forward to hearing that comforting, whooshing thump-thump of a fetal heart beat, just as she had with Isla.

But this ultrasound was not the same. The ultrasound technician called in someone else to look at the results. Then another. A 20 minute procedure turned into two hours. Finally, her doctor broke the news - something was wrong with the baby. Something was very wrong with his tiny heart. The stunned Ortyls were referred to the facilities at Children's Hospital for a fetal echocardiogram, which revealed the baby had a rare and serious congenital heart defect called Truncus Arteriosus.

It's a complicated defect in which the embryonic heart fails to develop a separate aorta and pulmonary artery, and instead has one big loop in which oxygenated and un-oxygenated blood mix. There is often an accompanying septal defect. The heart of a Truncus baby cannot move blood between the lungs and bodily organs efficiently enough to survive. The only treatment is surgery when the baby is about a week old. Left untreated, Truncus is almost always fatal before age one.

Little Oakes came into the world surrounded by a team of doctors and nurses that were well-prepared for his arrival. Becky and Greg were able to hold him. "He let out a yell like a healthy baby," Becky recalled.

He was then scheduled for his Truncus repair at St. Louis Children's Hospital, which involves patching the septal defect and splitting the Truncus to form the pulmonary arteries and the aorta. Despite complications and a delay, surgeons fixed his tiny broken heart. Oakes then went home with his family to heal and gain weight.

Oakes did not, however, gain weight. Becky recalls that it broke her heart to hear the pediatrician categorize him as "failing to thrive." Additional echocardiograms revealed that blood was not flowing correctly in his heart. The Ortyls knew another surgery was on the horizon, but doctors wanted to wait until he was stronger.

Even so, "one day, just by looking at him, I had a gut feeling that something wasn't right," Becky said. "I called the hospital and made an appointment to bring him in."

Oakes was back in surgery immediately. Afterward, "he was recovering from that surgery, but still showing signs of struggle," Becky said.

Oakes was diagnosed with Pulmonary Vein Stenosis, a narrowing of the veins that bring oxygenated blood to the heart. It is a progressive disease, and while balloon catheterization and stents can sometimes offer relief, those techniques would not help Oakes. The narrowing was too severe in Oakes' lungs. He needed new veins and the only way to get new veins was to get new lungs. He needed a transplant to survive.

He Rallied

After several weeks at Children's Hospital, Oakes was able to go home with his parents and big sister to await donor lungs. Often the wait is very long, but Oakes was fortunate. Becky remembers, "he was at home for 36 hours when we got the call!"

As he was being prepped for surgery, Becky looked at his tiny body, marked with a chest scar and so many tubes and wires, and wondered about the baby who must have died for her son to live. Her eyes filled with tears as she mourned for the unknown child who would live on within Oakes. So close to losing her own son, she could understand the pain this family must have suffered and her gratitude to them was intense. In a year, the Ortyls may be able to contact the donor family, but for now, the lungs are beloved but anonymous.

However, Oakes' body began to reject his new organs.

"The result of rejection created congestion in his heart and eventually began to affect his other organs," Becky said.

He became swollen, puffy with retained water caused by malfunctioning kidneys. The doctors at Children's warned the couple that a kidney transplant would not be successful, and it was possible that Oakes had reached the end of his journey.

But he rallied. His kidneys got back to work and Oakes endured. He even smiled and put his little thumb in his mouth. He still has a number of tubes and wires connecting him to a variety of machines, but he can breathe on his own with only a small boost from a ventilator. Soon, hopefully around Christmas, nine-month-old Oakes will be able to go home to Webster Groves.

The Gift of Life

The Ortyls feel very blessed. They have received tremendous support from their family and community, but they recognize that not every family dealing with a congenital heart defect is so fortunate. Some families arrive at Children's Hospital with the clothes on their backs, a baby in their arms and little else.

To honor the strength of their son and help less fortunate families, the Ortyls have formed The Mighty Oakes Heart Foundation. The first fundraiser in November raised over $60,000, which will fund several worthy projects benefiting families at St. Louis Children's Hospital.

According to Amy Rush, Mighty Oakes Heart Foundation board member, one fundraiser attendee said:

"Becky and her family have every right to 'want' for what they are going through, yet they are concerned about others. Amazing people. It was a privilege to be a part of that."

Families impacted by a congenital heart defect can apply for assistance through The Mighty Oakes Heart Foundation by visiting the website www.mightyoakes.org. The website also provides information on congenital heart defects and links to additional resources, as well as a place for donors to contribute to the foundation.

Back at St. Louis Children's Hospital, Becky expressed her profound gratitude for all the things everyone has done for her son, her family and the greater family of the CICU. She appreciated every meal anyone ever made her, every gallon of milk or basket of fresh fruit, even the smallest favor, note or email that let her know that someone was thinking about and praying for her Oakes.

She believes, though, that the most thoughtful gesture people can offer a family with a sick child is to donate blood or sign up for organ donation. Such kindness can save a child's life. As the Ortyls look forward to New Year's with Oakes at home, Becky said, "the best gift anyone can give is the gift of life."