My name is Kelsey Thomas and I am the proud parent of a Congenital Heart Disease Survivor.

written by Kelsey Thomas

After an uncomplicated pregnancy and delivery, our son Jacob William Thomas, was born on April 10, 2012 at 9:40am. Jacob received two Apgar tests immediately following delivery and scored 8/10 and 9/10, and appeared to be a completely healthy newborn.

At approximately 2:15am on April 12^th, I called the newborn nursery and asked for Jacob to be brought to my room so that I could nurse him. I still remember the nurses’ voice cheerfully saying, “Sure!” Thirty minutes later, I asked my husband if they had forgotten about us. He said to give them a few more minutes. That was about the time that the nurse practitioner from the Neonatal Intensive Care Unit (NICU) came into the room, without Jacob. I can still hear her say:

“Jacob’s skin appeared a little bluish and we performed a pulse oximetry test on him. The initial result indicated that Jacob’s blood/oxygen saturation was 73%. At that time, Jacob was brought up to the Neonatal Intensive Care Unit and we placed him under an oxygen hood. We think that there is something wrong with his heart and will perform an echocardiogram on him later this morning to find out more. Get some rest and we’ll see you when you wake up.”

It didn’t seem real. Eight days later, Jacob underwent open-heart surgery, to repair a rare congenital heart defect known as Cor Triatriatum Dexter. 75% of deaths occur in infancy, if this congenital heart defect goes undetected. The head physician at Pediatric Cardiology Associates in Syracuse last saw Jacob’s condition in 1978.

This whole experience was like this vivid dream from which we couldn’t wake up. Focus on the word dream. If this simple, inexpensive test hadn’t been performed on our son, we would have brought him home and I would be writing this today as the parent of a deceased child, our worst nightmare. I can’t imagine what my life would be like if this test had not been performed. I would have lost this amazing little boy and never known who he’d be today. It would not only have changed me as a person, but it would have changed our entire family forever.

The American Heart Association first contacted me in November of 2012. I was asked to do an interview with CNY Central – a Syracuse TV station, regarding the Pulse Oximetry test that had been performed on Jacob. I was told that the AHA was working to have a “Pulse Oximetry Bill” passed by the State Senate, Assembly and if all went well, the Governor would sign it into law. That was when my work began. I went on to do a total of five TV interviews as well as writing letters to the editor and traveling to Albany with my husband and Jacob to meet with Senators and Assemblymen to lobby for the Pulse Oximetry Bill. After our first trip to Albany on April 16, 2013 the State Assembly passed the Pulse Oximetry Bill – A2316. It was then up to the State Senate to pass the bill. On June 10, 2013, our family traveled to Albany again to meet with members of the Senate. This time, we were able to meet with Senators John DeFrancisco and David Valesky from our district. We gave petitions for the Pulse Oximetry Bill to Senator DeFrancisco, who asked us to share Jacob’s story. Then Senator Valesky took us into the Senate Chambers, where Jacob sat with Senator Valesky in his senate seat! It was a memorable experience, to say the least! The Senate passed the Pulse Oximetry Bill on June 14, 2013 and Jacob was even mentioned by Senator Valesky when this bill was discussed. I knew in my heart this bill was going to pass. It had been brought before the Senate and Assembly for the past three years, but I just knew that this was the year.

On August 1^st 2013, Governor Andrew Cuomo signed Chapter 184 into law. This law ensures that all newborns will receive a pulse oximetry screening prior to discharge from the hospital or birthing facility. When I received word from Senator Valesky’s office that morning, my first reaction was tears. All the tears I cried when Jacob was first diagnosed with this life-threatening heart condition had turned to tears of overwhelming joy and pride. I couldn’t believe that something that I thought was the “worst time of my entire life” had turned into something so good. I know that this law will save the lives’ of so many babies born with congenital heart defects that may show little or no warning signs. This will give parents peace of mind before leaving the hospital with their new baby.

Sometimes I really don’t think I grasp the magnitude of this. In April of 2012 after Jacob was born, I just remember I kept saying, “Why God?” “Why is this happening to our baby?” Now I know. It was so I could advocate for these babies and give them the chance at early detection and intervention, so that they can lead long, healthy, happy lives. I played a key role in this law being passed and I can’t tell you what that means to me and our family. Jacob will never remember those first two weeks of his life and what he went through and the strength that he had, but for my family and me, it’s something that we will never forget.

As of today, Jacob is a healthy, happy and amazing 22-month old, who is stronger than he will ever begin to know.