We walk in memory of our son, Hayden Liam Daniel. This is his story. Hayden was born on June 24th 2014 at 9:38am in Athens Georgia. We found out at 18 weeks, in utero, that Hayden had a heart condition known as Hypoplastic Left Heart Syndrome. On July 2nd Hayden had his first open heart surgery, known as the Norwood. Due to some complications, with fluid build up, he had some drains put in. One of those had done some damage to some lymph nodes. Hayden could not nurse like a normal baby. He was unable to receive any breast milk or formula with a high fat content for 10 weeks. He came home for the first time on July 26th. On July 28th he was brought back to the hospital, he had some breathing complications. On August 6th Hayden came home for the second time. While at home we became use to his life at home. Medications were very important and were given during multiple times of the day. Hayden had a lot of doctor appointments. On September 30th Hayden returned to the hospital. He was dehydrated from throwing up. He was brought into the step-down unit instead of ICU. Late that night Hayden’s levels dropped and he was rushed over to ICU. The next day, October 1st, was one of the hardest days for us. Hayden went into cardiac arrest somewhere between 7:45pm to 8:00pm. They were able to get him back to where he needed to be. After a quick turn around and a short stay Hayden was discharged on October 11th. We came back home and everything felt normal to us again. It felt like we were home for a lot longer than we were. Then we returned to the hospital with Hayden for the third time on October 18th. We had no idea when we returned this time that it would be our hardest time in the hospital. On October 21st he went into the cath lab. We knew it was getting closer to the time for him to need his second open heart surgery. A few days after his cath, on October 25th, Hayden went into cardiac arrest for the second time. The cause of this arrest was aspiration. A nurse thought that Hayden had a seizure during that arrest. He was closely watched and had multiple test ran, an EEG, CT, and MRI. He went on seizure medication. The results came back that there was a small amount of damage done to his brain. When Hayden woke up for the first time, after his arrest, he seemed very normal. All the doctors said the damage that was done shouldn’t cause any problems. On October 28th Hayden had a nissen/g-tube operation. His recovery from that operation was quick. Everything was going back on track and it seemed like we would be going home soon. Hayden was in the step-down unit when his oxygen levels were staying really low. They decided that the time was now for his second open heart surgery and that we would not be going home. They brought him to ICU to keep a better eye on him. On November 12th he had his second open heart surgery, known as the Glenn. This surgery was very risky due to Hayden’s weak heart. The surgery went very well. A few days after his Glenn his head and face began to swell. They thought that he may have a clot somewhere. Hayden was rushed into the cath lab, on November 15th, for the second time only this time we were told that he may not make it through. Hayden had came out of the cath lab doing ok. On November 20th Hayden had a diaphragm placation. The reason for this was that his diaphragm was not moving like it should. They were hopeful by do this he would be able to get his breathing tube out. He took longer to recover from this operation. He failed two attempts to have the tube removed. We began talking to the doctors about having Hayden listed for a heart transplant. The only thing that was keeping him from being listed was the fact that he could not get the breathing tube out. We stayed in limbo for awhile with him. Things started to go bad again with his oxygen levels. The doctors were unsure what was going on with him. After an echo they found out that a section had opened up in his heart that was taking blood away from his lungs and putting it back in his heart. This was why his oxygen levels were low. We were happy that things seemed to have been figured out. So on December 16th Hayden was brought inside the cath lab for the third time. They fixed the problem and his oxygen levels were back up. We were so excited. Then things took a turn for the worst. Hayden’s levels were dropping and they were doing everything they can to help him fight. We called early in the morning on December 19th and the doctors told us that during the night things became even worse. We rushed over to the hospital. Hayden passed away in our arms at 12:28pm. Hayden fought long and hard and we were so hopeful that we could have had him home again. Hypoplastic Left Heart Syndrome is very serious and we had no knowledge of this heart condition. Hayden is in our hearts and in the hearts of the people he touched with his big sweet eyes. Hayden will always be loved and missed.
You can follow our efforts to help raise awareness in Hayden’s honor at http://www.facebook.com/haydenshope2014.
Our team is raising critical funds for congenital heart defects! Congenital heart defects are the most commonly occurring birth defect, affecting approximately 1 in 110 babies born, or a child born every 15 minutes. Congenital heart defects are the leading cause of birth-defect related mortality.
Funded research is making a very big difference in the lives of CHD patients, helping to reduce incidences and increase survival, longevity and quality of life. Research has made a very big impact, and with survival and longevity increasing, even more research is needed to help address lifelong challenges that CHD patients will face. Every dollar in support of The Children’s Heart Foundation helps to further their mission: to fund the most promising research to advance the diagnosis, treatment, and prevention of congenital heart defects.
Please support our team, join us for the Congenital Heart Walk, or both!