Meet Other Heart Babies
Landyn Turner Clark was born in August 2011 in Greenville, SC. In April, Mackenzie and John went to their scheduled appointment to find out the sex, check measurements and make sure their baby was healthy. It was truly a very happy day for the family that quickly turned into a feeling of sadness, fright and uncertainty about their son’s future. The doctors discovered a problem with his heart, along with several other problems. The couple was told that many of these children are able to survive, thrive and live a semi-normal life due to recent advancements in medicine. When the parents welcomed Landyn into the world, they knew about the heart condition, but were not informed of or prepared for his tracheal issues and a few other birth defects. They airlifted Landyn to MUSC and the couple drove through the night to be with their son. He was stable when he arrived, but by the early morning hours had taken a turn for the worse.
Mackenzie and John were told he would most likely not survive and had less than a 10 percent survival rate. Landyn was hooked up to ECMO on Sunday evening and on Wednesday, the surgeon operated on him. They did a complete tracheal slide and placed a central shunt into Landyn’s heart. The parents were told that this would be a very challenging surgery because the trachea was extremely small, and one of the worst cases that either of the surgeons had seen. They also were told that the trachea would have to be opened more than 40 percent for their son to have any chance of survival and also be able to come off ECMO. Thankfully, Landyn came through the surgery fine and came out of the OR off ECMO!
Landyn has had multiple surgeries and heart catheterizations. During his stay at MUSC, it was noted that Landyn’s left ventricle was not growing like it should. Therefore, his heart would have to be repaired as a Single Ventricle. Essentially, this meant he would be repaired in stages called the Fontan Procedure. After 4½ months at MUSC, Mackenzie and John welcomed Landyn home, just in time for Christmas. Landyn had his second open-heart surgery in May 2012, The Bidirectional-Glenn. Landyn is scheduled to have his third and hopefully final heart surgery, The Fontan Completion, in July 2015.
Mackenzie said, “With clothes on, he looks like a “normal” healthy baby. He has a huge personality and after everything he has been through, he truly is one of the happiest babies I know. Despite the challenges of all his equipment, Landyn has done really well at home. People often hear of miracles performed here on earth but we now can say we live with one every day!”
In early 2012, Crystal and her husband Brian were excited to find out they were expecting. After learning they would have a son, the couple received a prenatal diagnosis of Down Syndrome and Tetralogy of Fallot, a CHD that would require open-heart surgery to repair. That September, Brinkley was born six weeks premature and spent seven weeks in the NICU.
On December 2, 2012 they found out his heart had become unstable and they were emergency air-lifted to MUSC. Brinkley had his first open-heart surgery within 24 hours. Their family had to temporarily relocate as Brinkley was admitted for five weeks due to complications following his heart repair. Those weeks included Christmas and New Years. In February of 2013, the family was emergency air-lifted to MUSC once again due to Brinkley being in complete heart block.
On Valentine’s Day, Brinkley had his second open-heart surgery and received a pacemaker. Their stay was 10 days with this admission. During both of their admissions, the ERHF provided meals, as well as gas cards to help them make the trips back to the upstate for work and care of their older son.
Crystal said, “The ERHF provided us piece of mind that we could care for our family while minimizing our financial worry. They also provided us with the emotional support of knowing that we were not alone on this journey. We are forever grateful for the love and support that they have shown to our family during some of the scariest moments of our lives.”
During Ashley’s 20-week scan, she and her husband, Russ, were told that Hampton had tetralogy of Fallot, a CHD involving four issues with his heart consisting of pulmonary stenosis, ventricular septal defect (VSD), an overriding aorta and right ventricular hypertrophy or thickening of the bottom right chamber due to pulmonary stenosis. Everyone decided Hampton could be born in Greenville, SC and that he would probably only require one surgery at approximately six months old to repair everything. Once he was born, the doctors performed an echo and continued with their initial plan that he had “garden variety” ToF. However, as the days went by, Hampton’s saturation levels kept declining, as detected by a pulse oximeter. At eight days old, the doctors decided with the help of MUSC that it would be best to fly Hampton to Charleston for further evaluations.
Once in Charleston, he was rushed immediately into surgery to place a Blalock-Taussig shunt. This was a band-aid repair that would allow blood to go from the heart to the lungs to get oxygen to supply to the body, bypassing the narrowing of the pulmonary artery. This surgery worked beautifully, though there were several hiccups along the way since he was so small and so sick. Hampton remained at MUSC for six more weeks before returning home. Russ and Ashley continued to monitor his weight gain and oxygen saturation levels until the full repair was done at 6 months old. He has defied all odds.
Russ said, “We were told several times while at MUSC just how sick he was when he arrived at MUSC. We are so grateful to the many healthcare providers and our Savior Jesus Christ. Hampton is truly our little Miracle. We would also like to thank the Emerson Rose Heart Foundation ® for the legislation they passed requiring all babies to have a pulse oximeter reading. Without this device, Hampton could have been sent home and our story could have been much more grave.”
Just before New Year’s Eve 2012 Vince and Heather received the news that they were going to be parents for the second time. They had a 7-year-old daughter and dreamed of having a son, and so they anxiously began preparations for their new bundle of joy.
During Heather’s 20-week ultrasound, the doctor was unable to see some key parts of the heart clearly, so the OB scheduled them for a follow up ultrasound. After a second attempt with no better results, the couple was referred to a maternal fetal medicine specialist for another ultrasound. It was this ultrasound that changed the families’ lives forever. After an extremely long visit, the doctor confirmed their worst fears — Mac had a congenital heart defect. The cardiologist told the parents that their son had Double Outlet Right Ventricle with Transposition of the Great Arteries (DORV-TGA).
Before his arrival, the couple was unsure how Mac would be able to do on his own after delivery based on the information received from the ultrasounds. The days following his birth were filled with X-rays and echocardiograms to determine the best plan for Mac’s care. After five weeks in the hospital, Mac had his first surgery, in which the surgeon placed a band around his pulmonary artery. Mac did amazing after surgery and was able to come home a week later. Heather said, “When Mac arrived, we fell in love at first sight. We give praise to God for the many victories we have already seen and know that we will see many more in the days ahead.”