When I think back to each of my pregnancies I distinctly remember praying for the health of each baby. I more specifically prayed for each to be born with a perfectly healthy heart. Such a specific prayer might seem silly to some but my family has not been unscathed by congenital heart defects and electrophysiological heart issues. I lost a brother to a congenital heart defect in 1990. I have an uncle who in his 50s discovered he had lived his life with a defective aortic valve. He has since undergone a valve replacement. I had an aunt who since childhood suffered from tachycardia. As an adult she underwent an unsuccessful ablation and ended up with a pacemaker. Her tachycardia remained. She died in 2012 from sudden cardiac arrest at the age of 56. In 2005 I had a successful ablation for tachycardia at the age of 25. Perhaps it is becoming clearer as to why each baby received extra prayer for a healthy heart.

Each of my loved ones were a perfect reason to jump on the bandwagon for heart education and awareness, but my inspiration for advocacy came on May 21, 2010 at 6:29 a.m. when we welcomed our second son, David Dwayne Tesch. David was born a seemingly healthy baby weighing in at 8 pounds 12 ounces. He received a 9 on his 5 minute Apgar. He had good color, he had good weight, and he nursed multiple times throughout the day. He passed his newborn screening. It seemed there was little doubt that he was born perfectly healthy, but in the late hours of his birthday, and the early morning hours of the day that followed, I began questioning the nurse that “something” didn’t seem right. He was sleepy, cold and appeared to be breathing fast and shallow. This wasn’t anything like my experience with our first son, but each time I said something the reaction, or the lack thereof, was the same. I was quickly reassured that this was normal.

At 2:30 the morning of May 22, after nearly six hours of attempting to get him to nurse, I asked that David be taken to the nursery so I could rest. Surely my inability to get him to eat and the nurses’ growing frustration with me would be better handled with a little sleep. Upon taking him into the hallway lighting, the nurse noticed that he had an underlying dusky tone and his muscular tone was decreased. They admitted him to the Level II nursery and treated him for hypoglycemia. We received this news that but given that he had not eaten for some time we were assured there was no need for alarm. In what seemed like an eternity later we were updated that there was something seriously wrong with David and that he was being transported to Children’s Hospital. The nurse strongly suspected that based on the size of his heart in an x-ray it was likely to be heart-related. We were instructed to go say our goodbyes before LifeLink got there. I remember walking into the Level II nursery, walking slowly by each of the pink babies under the warmers, thinking each of them was David, and then to have finally stopped and have my eyes fall upon him – completely and totally in shock and horror of what I saw. The chubby, pink baby I remembered from what was just hours before had been replaced by the vision of a lifeless, gray baby with wires running everywhere and a medical team trying to revive him. They medical team prepared us for this being the last time we would see him alive.

Before I could even be discharged from the hospital, the medical team at Children’s Hospital diagnosed David as having several complex heart defects ‑ aortic stenosis with thickened restrictive leaflets, coarctation of the aorta, an under-developed left ventricle and an under-developed mitral valve commonly known in combination as Hypoplastic Left Heart Syndrome (HLHS). To make matters worse for him, he entered into respiratory failure, congestive heart failure and acute renal failure from his body being starved of oxygen from his delayed diagnosis. He spent nearly a month in the NICU allowing his organs time to recover and for his little body to begin to lose the nearly four pounds of fluid he had gained from being in kidney failure. He spent another month and a half in the Cardiovascular Care Center recovering from heart surgery and the countless other procedures and surgeries while being weaned of the ventilator. We knew he was still a very sick little boy. We were reminded every day that it was a miracle he was alive and that is something we would never take for granted.

On August 10, 2010 we were finally able to bring David home. The house was littered with medical supplies, nearly a dozen medications and special equipment to take care of our little warrior. It was an incredibly joyous day for our family to finally be under one roof – a day that we will never forget. In the late morning hours of August 11, while resting peacefully in a bouncy chair, David’s pulse ox began to alarm. I watched my son take his last breath. My attempts and the first responders’ attempts to revive him “one more time” were unsuccessful.

Shortly after David’s death I became connected with other families that were affected by congenital heart defects. I began meeting all of these amazingly wonderful families with the most adorable kids. Kids that at first glance looked so healthy but were enduring stuff most of us couldn’t even begin to imagine. There were so many stories of babies not being diagnosed in utero that it made me quickly realize David’s story was one that is told far too often. All I could ask myself was why were we not doing more? It didn’t take me long to find answers to better diagnosis. What was shocking was that there was work already being done right here in Minnesota to be able to better screen babies for congenital heart defects. I was able to connect with Annamarie Saarinen, the local Mom who made it her mission to have every baby screened for CHD after her own daughter Eve was diagnosed using pulse oximetry. She made things so easy for our Minnesota CHD community to get involved by posting all anyone would ever need to on her website.

The feedback within the Minnesota CHD community was astounding to pulse ox. It seemed like such a simple and easy decision to make. The question I heard over and over again is why wouldn’t do it. I started popping in on lectures and presentations on pulse oximetry to better educate myself. At one point, early on, even my own belief in the “why wouldn’t you” mentality was swayed as the hospital David was born at dismissed the idea of implementing pulse ox stating that “implementation of the process has not shown reliable.  The sensitivity and specificity of the pulse oximetry as a screening tool is highly variable and influenced by many normal newborn physical factors. Prenatal diagnosis of congenital heart disease is the preferred mechanism for diagnosis.” I was at a loss of words. All I could envision is what David had endured and that there were going to be more babies just like him – babies that suffered because of a late diagnosis. I know that I was new to the world of public health and advocacy but how hard could implementation be for a hospital? I didn’t understand why they couldn’t take the work that was being done at these hospitals in the pilot study and implement it.

On August 9, 2012 the Minnesota Department of Health Newborn Screening Program Advisory Committee Meeting unanimously passed the recommendation to add pulse ox to the newborn screening protocol done here in Minnesota. This was tremendous news! Having the Minnesota Department of Health tacking outcomes and administering guidelines for every hospital was a much more efficient way to ensure the screening was being properly implemented. With my limited knowledge I thought this was the end – the victory for our CHD communities all future babies born in Minnesota. What is next one might ask? I certainly had no idea but thanks to a fantastic teacher, and an incredibly patient woman, I learned.

Work was being done on writing a pulse ox bill for the 2012 legislative session. I should have paid better attention in high school when we learned all about how a bill becomes a law, what is a Representative verses a Senator and politics in general. Thank goodness for the internet! With social networking so much a part of our lives it was easy to take the assigned task of finding people to contact their local Representatives and Senators. However, in a rather disappointing turn of events the bill was pushed aside to finish up on more pressing matters in the legislative session.

In the 2013 legislation session the pulse oximetry bill was a priority. There was a strong backing by many within the House and Senate but with any bill there comes with it a substantial amount of work to retain authors of the bill and discussion among the many different committees. Again, social media helped out immensely to reach out to many in the CHD community urging them to contact their local state government. I am probably the least political person you will ever meet so I went in with little knowledge of how each party functions, process of thought or even their belief systems. I learned so much at the capital during this legislative session! Although it was tough to listen to viewpoints of others on a matter that seemed simple and straight forward to me, it was even tougher spending weeks and months sharing David’s story over and over again. It was emotionally draining. Reliving the darkest moments of your life is not easy task to take on. I knew that the years’ of hard work and research done from all those involved with the pilot study could have easily done this without my help but the fact that they let me share David’s story, no matter how hard to tell, is something I am forever grateful. It has made me feel like I contributed, even if in the tiniest increment, to helping other families never have to endure what ours has and, more importantly, that their children never having to suffer the way David did.