Noah Paul Stassen was born with a major complex heart defect on December 9, 2003. It was unknown to us or medical staff that he was fighting for his life until the morning of December 13, 2003 at Texas Children's Hospital Emergency Room. There he was resuscitated and we all gathered to pray the doctors/surgeons could do something to save him. The news was delivered that he needed open heart surgery and on December 16th at one week old he underwent surgery to try to reroute his heart. He was born with a complex form of Hypoplastic Left Heart Syndrome (HLSH) and Dextrocardia. The HLHS meant the left side of his heart had not formed at all or was underdeveloped and the Dextrocardia meant his heart was on the wrong side of his chest.
 
My husband, Mark, and I were shocked to learn little babies could have heart disease. We thought it was only through lifestyle and age this happened. We heard of heart murmurs and "holes in the heart" but didn't think beyond that and automatically thought those babies were "fine". Mark's dad had just died from vascular disease from Diabetes, so this was this was the only experience we had to pull from. How quickly we were educated!  Why hadn't anyone mentioned this during our OB-GYN visits or during the many ER visits I had because my doctor was sure I would miscarry Noah? There were so many ultrasounds, I couldn't keep up with all the pictures and was reassured each time that this was a boy but never do I remember hearing anything about a heart or how many chambers Noah had.
 
Unfortunately, due to the Tricuspid valve regurgitating and leaking, his heart continued to fail and struggle to sustain life, and they informed us that Noah was not a candidate for further Open Heart Surgery. The doctors decided that Noah should stay at Texas Children's Hospital Cardiovascular Intensive Care Unit until he could have a heart transplant, this was our only option. At just 2 months old, he was listed for a heart and at 3 months old he received his gift of life. March 14, 2004 was a very bittersweet day for us, we knew there was a family not too far away grieving the loss of their child while our son Noah was being given the chance to survive. He recovered beautifully and did very well with his new heart. We had many hospital admissions for a year after transplant due to being immune suppressed and getting sick a lot, but he continued to thrive.
 
During this time my husband's employer went bankrupt and he was forced out of his job.  Luckily, he quickly found a new one. With the new insurance plan, we found out that Noah was not accepted due to pre-existing conditions. This is where we learned all about the frustration of health insurance. Anyone I had spoke to, whether they were medical professionals or not, had no idea what Congenital Heart Disease (CHD) was unless they themselves had been affected. It was scary when I realized that I had to educate the EMS who helped bring Noah by ambulance to the hospital and the insurance representative who was trying to deny his need for another x-ray (they had figured since he had just had one, that he didn't need another one). This was both confusing and odd since finding out that CHD is America's #1 birth defect and kills more children under 1 years old during the first year of life than any other defect. Where was the support for parents and children affected by this? I found a few groups online but they didn't go beyond that. I felt defeated, frustrated and tired. There was no support or awareness happening on a national level. This is where It's My Heart, Inc. was born. I had whined enough and figured if it meant that much to me then stop complaining about it and do something about it. However, I knew this was a team thing and couldn't do this alone but knew better that there were definitely proactive parents like myself who would want to make a difference in the lives of those affected by CHD.
 
Amazingly Noah had an entire year without any admissions to the hospital but we did have many checkups, testing, and surgical procedures known as Catheterization to biopsy his heart for rejection. This was all routine so we learned to live with all this and the medicines every day of his life to keep his body from rejecting his heart. We had many hopes and dreams for Noah that he would live to be an adult and enjoy life with our family. He brought us an insurmountable amount of joy. I thank God for our beautiful son Noah. His Daddy, big brother Dade and I love him to pieces and will always remember him for the fighter he is.
 
On May 26th, 2006 Noah suddenly collapsed in our living room and never received consciousness after that. He was pronounced dead at Katy Memorial Hospital where the staff diligently tried to help him sustain life. It was impossible as we found out the autopsy results. Noah's life was taken by Coronary Artery Disease, a special type that only heart transplant patients get and it is the #1 reason transplant patients die. It was undetected and unfortunately research hasn't come far enough to save lives from this yet. The only answer is another heart transplant but you have to pray and hope that your loved one can endure another transplant and that a heart will come in time. We're blessed to know that Noah will never suffer again and is now in Heaven where he can live life free of all medical problems. Our family looks forward to the day we are reunited with our precious Noah. He forever will live on in our hearts and lives.
 
The death of Noah has left our family with huge holes in our hearts. We talk about him everyday and wonder what he'd be like at almost 5 years old.  Only recently have we as a family been able to sit at the dinner table again and visit Noah's favorite park.  Dade was just 8 years old when he witnessed his little brother take what would be, his last breaths.  He understandably suffered with Severe Depression and will always struggle with Post Traumatic Stress Disorder. We as a family cope the best way we can, and I must admit that our newest addition, Gavin, who will be 2 in February, has eased the transition into our "new normal" without Noah.
 
It is speculated that Noah would be alive today had he been diagnosed at birth. 
It is now my mission and hope, that his story will educate others regarding the critical importance of screening and instill my passion in those who can be the difference for these children. Noah's life was not in vane which is why I share his story with you. Noah lives on whenever his story is shared. I would like to share something personal but positive that keeps me going everyday. In the Bible in the book of II Peter 3:8, it explains that 1 day in Heaven equals 1,000 years on earth.  This means if I were to live a normal lifespan of 75 years, then I will be reunited with Noah in less than 45 "Heaven" minutes.  Therefore, I typically close Noah's story with my promise to him - See you in an Hour Noah!
 
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