I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Friday, February 6, 2015

Faces of CHD: Kayden

Kayden was born on December 21, 2007. He was born with dilated cardiomyopathy and a displaced tricuspid valve with severe regurgitation. He also had a bilateral cleft lip and palate and at a month old developed pyloric stenosis. Throughout his first year, he was seen regularly by his cardiologist and his heart improved. By his September 2009 visit, Kayden had almost normal heart function and his cardiologist felt it was safe to not see him again for a year. Kayden was basically like a normal child for his first 2 and a half years. He developed a preauricular cyst beside his ear, which needed removed in June 2010. No one exactly knows what happened but he continued to have complications and the cyst kept returning. In July 2010, Kayden was diagnosed with Congestive Heart Failure, my son was a fighter since birth but this began our toughest battle yet. He was in the hospital for around 10 days while the doctors got him on some medications for heart failure. He had his first cath in November 2010, we had 3 options, tricuspid valve repair or replacement, or a heart transplant. His pressures were too high so the cardiologists and surgeon at UVa didn't think he would survive a valve repair or replacement. Instead of jumping into the transplant decision, they wanted other opinions. I finally got a call from a cardiologist in Boston, MA who said Kayden might be a candidate for a cone repair, and possibly do the glenn on him also. We weren't scheduled to go to Boston until April 2011, but Kayden had other plans of his own. He continued to get sick, a cold or ear infection would send him to the hospital for anywhere from a few days to a week. In February 2011, he was sent basically because of his heart. He was just sick, no cold or anything. His heart was just failing. That's when his cardiologist said he really needed the surgery soon, little man was sent home on oxygen at night and as needed during the day. His cardiologist got in contact with Children's Hospital Boston, and they rescheduled his surgery to March 2011. So we drove from Roanoke, VA to Boston, MA on March 17, 2011 Kayden had his first and only open heart surgery. He did well with his surgery and recovery, we were there for only 3 weeks!! The doctors were very surprised with this, as he had a very unique little heart and had already heard so much from his team in Roanoke. We were home for about a week and he was starting to need his oxygen again, but now it was all day and all night. Come to find out he developed a pleural effusion(fluid build up around his lungs), this hospitalized him again. He was in there for a week with a chest tube to drain the fluid. This still wasn't enough, he continued to go downhill and the fluid kept coming back. By the end of May, his last appointment with his primary cardiologist, he told me Kayden just needed a new heart, that was the day he told me Kayden was his sickest outpatient he had ever had. He also said only about a handful of people in the US have a heart just like his, so that made it even more complicated. He scheduled us an appointment at UVa with the cardiologists to begin the transplant evaluation. He told Kayden before we left, he hoped he would see him again but next time he hoped he was running down the halls. I held back tears, knowing the possibilities of what the future held. June 14, 2011 began our stay at UVa as a transplant patient. That day they told us during the stay, if his kidneys or anything started failing he would be transported to Boston, to have his glenn taken down and placed on ECMO. He was evaluated and finally listed as 1A on the heart transplant list June 28, 2011. He was on the ventilator for a couple weeks and finally got off of it a few days after July 4th. When they took the breathing tube out, he took a nap. When Kayden woke up, he couldn't speak, or control his movements. We had NO IDEA what had happened!! They put him on some medication that helped control the movements and it helped some, though he still wasn't his self. He had developed chorea, I'm guessing from where he was on the ventilator so long. In the early morning hours of July 14, 2011 Kayden took his last breath. Kayden was 3 years 6 months and 23 days old the day I lost him. Today is February 6, 2015, to some of you it may mean nothing but for me, it means my son has been gone the same amount of time as he spent on Earth with us. Tomorrow, Kayden will be gone longer than he was here. Kayden only was listed for his new heart 2 weeks, in reality, I don't think he ever had a chance. I think we waited too long to decide to do a transplant on a sick little boy. I still feel partially responsible, as his mom I feel like I should have noticed and said do the surgery and then bring us home to be evaluated and listed for transplant. We ALL knew he would need one, we were just wanting him to get his strength built up before doing it! My heart hurts, a part of my future was stolen from me. I have 4 other children who will grow up without a piece of them. Kayden had a huge heart, and I say it was so full of love, he didn't want to give it away. A promise I made to him was I would fight for him until I took my last breath. He may not have understood me, but I know I made that promise. So I will continue to fight for CHD Awareness, and be an advocate for Organ Donation. Kayden was, is and will always be my HERO! He is an inspiration, he went through 6 total surgeries in his short life, and no matter what he was faced with continued to smile through it all! Our family misses him more than anything in this world, and he is one little person who truly left his mark on this world. His story will continue to be told and spread throughout the world until everyone knows about Congenital Heart Defects. 

To follow Kayden's memorial page and updates on a memorial fund in progress go like his page on facebook www.facebook.com/kaydenjameschdangel

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