In October 2010, Greg and Becky Ortyl went in for a seemingly quick ultrasound to find out the gender of their baby, who was due in March 2011. Shortly after it was determined they were having a boy—a boy they would name Oakes—the mood in the room began to turn a bit tense. The ultrasound technician began to take much longer views of Oakes and grew frustrated that she couldn't get the right angle. She left at one point, hoping Oakes would flip around a bit to give her the view she was wanting. Greg and Becky weren't expecting such a long visit, so they had brought Oakes' big sister, Isla, with them. Isla was, of course, getting restless... After all, she was just 18 months old.
As the nurse again started staring at Oakes, it was clear to Greg that SOMETHING was not right. This fear was validated a short time later when the nurse said she had to go get the doctor to take a look. They weren't sure what the doctor had to take a look at exactly, but it couldn't have been good.Finally, after two hours of viewing the ultrasound, the doctor flipped the light on and told Greg and Becky that Oakes' heart did not look right and that it was indicative of a heart defect. He went on to say that there also appeared to be calcium deposits around the heart, which was probably a sign of a genetic disorder, along the lines of Down Syndrome.
Fortunately, the Ortyls live in St. Louis, home of one of the best children's hospitals in the country—St. Louis Children's Hospital, closely affiliated with the Washington University School of Medicine. The staff at SLCH was compassionate, educational, inspiring and extremely helpful. The Ortyls quickly made appointments for fetal echocardiograms and ultimately an amniocentesis.In early November 2010, Oakes was diagnosed with a congenital heart defect named truncus arteriosus, a defect in which the heart is developed without a pulmonary artery—rather, a large "trunk" artery exists taking blood from the ventricles of the heart to the lungs. There is also usually a hole between the right and left ventricles of the heart, as there was in Oakes' case. It is a defect that babies can live with for days, even weeks. It sometimes goes undetected until babies are many months old until they begin developing stronger signs of distress which leads to diagnosis.
Oakes Lee Ortyl made it full term and was greeted into this world by a team of a dozen doctors and nurses at Barnes-Jewish Hospital on the evening of March 10, 2011. Within minutes, he was whisked down the hallways from Barnes to Children's Hospital's Neonatal Intensive Care Unit.
Oakes was scheduled for his truncus arteriosus repair on March 15, 2011. As the SLCH operating room staff readied Oakes for surgery, they could not get the breathing tube down his throat all the way. As much as the Ortyl family had readied for this surgery since October, they were shocked when, just 45 minutes after they had left Oakes, a doctor was approaching their waiting room and they feared the worst. Although the news wasn't horrific, they were told that, besides Oakes' heart defect, he also had a tracheal defect called complete tracheal rings. Most people have half-rings of cartilage in their trachea, but Oakes had full rings which significantly reduced the airway passage. The doctors decided to postpone surgery by a week and that they would perform both the truncus repair and a slide tracheoplasty surgery at the same time.
On Oakes' mama's birthday, March 22, 2011, legendary Dr. Charles Huddleston led a team that successfully inserted a cadaver vessel, thereby creating a new pulmonary artery, and widened Oakes' trachea. As would be the case, over and over, Oakes was not finished surprising us all. On the Friday of Memorial Day Weekend 2011, after a few weeks at home, Oakes became lethargic and was not interested in eating. Becky's instincts told her something was wrong, so the Ortyls headed back to SLCH. After reviewing an echocardiogram, they discovered severe stenosis, or narrowing, of Oakes branch arteries between the new pulmonary artery and the lungs. It was discovered during a cath procedure on June 9 that he had severe pulmonary vein stenosis. This is narrowing of the veins which take oxygenated blood from the heart back to the lungs and is a progressive disease that is nearly impossible to treat. The veins are so small and are too deep into the lungs to repair. This meant that Oakes needed a double lung transplant. While buying time to wait for the lungs, Oakes had three stents put into his pulmonary veins on July 2. Those stents did, in fact, temporarily alleviate the blood flow issues and Oakes enjoyed some of the best days of his life. The Ortyls were able to take him home on July 19 while they waited for the lungs. They did not have to wait long.
Fewer than 36 hours after arriving home, the Ortyls received the call that they were waiting for: Oakes had his lungs! They quickly gathered some essentials and headed back to that familiar hospital. By 3:45 a.m. on July 22, Oakes' new lungs were en route to St. Louis and his transplant surgery had begun. Of course, Oakes did fantastic during the seven-hour procedure and began his road to recovery. It is important to remember that Oakes' second chance at life came from another baby who had lost his or her life. Someone who Oakes has never met decided to give the gift of organ donation, such a special gift to give, and therefore the gift of life.
The greatest danger in any transplant is the patient's body rejecting the new, transplanted organ. Oakes antibody level was abnormally high since his body had already had foreign blood and tissue from his various operations, so the doctors had to aggressively attempt to lower these levels since it was fairly certain Oakes would reject his lungs at these levels. They began plasmapheresis, a five-day process which consists of a machine removing Oakes' blood, stripping out the plasma where most of the antibodies exist, placing new plasma into the blood and delivering it back into the body. It's considered an aggressive technique for a teenager, much less an infant. But Oakes was, as usual, up to the challenge. He has had several five-day plasmapheresis sessions and has even started chemotherapy to help with the rejection. Oakes' recovery has been slow but steady.
Two open-heart surgeries, three cath procedures, a slide tracheoplasty, plasmapheresis, chemotherapy and a double-lung transplant... All before turning five months old. Throughout the diagnosis, the pregnancy, the hospital stays, the surgeries and each recovery, the Ortyls kept their family and friends updated via email, texts, a blog and Facebook. Shortly after his first surgery, the Ortyls received an email in which Oakes was called "mighty.” The name stuck: Mighty Oakes. Oakes' story was such a powerful one that before too long, the Ortyls were receiving emails, letters, gifts and phone calls from hundreds of people, dozens of whom they had never met. Mighty Oakes’ story has now touched and inspired countless people, and word of his story keeps spreading every day. His strength and courage and will to live have indeed inspired us all.
The Ortyl family has experienced the rollercoaster of emotions that goes along with having a child with a congenital heart defect. The uncertainty, then the hope, then the fear, then happiness, then devastation, followed by exhilaration and on and on... They’ve made friends with other families going through similar upheaval in their lives, many from far-away places who struggle not only emotionally but financially, as they leave families and jobs trying to provide love and support for their sons and daughters. Mighty Oakes Heart Foundation was created with a mission to carry on the legacy of Oakes Ortyl, a mighty warrior born with a congenital heart defect, by spreading love and hope to heart families. Through critical financial support and emotional comfort, we enable families to focus on the love that empowers them to bravely face the fight.
Together, we can be mighty and make a difference. Will you join us?
With MIGHTY love,
Greg and Becky Ortyl