written by Kelsey Thomas

I am the proud parent of a congenital heart disease survivor. I am also proud to say my work is helping save more babies like my son.

Finding out that we were having baby number two was such an exciting moment in our lives. We already had our healthy, happy two year old girl and were hoping for a little boy to complete our family. When we went in for our 20-week sonogram, we heard just that… “It looks like a boy!” I was overcome with joy and emotion at the thought of having “the perfect family”.

I really enjoyed my pregnancies with both children. But the second time around, my pregnancy seemed to have less swelling and discomfort, up until the last month that is, when I couldn’t sleep well. Since we had a Caesarean with our daughter, we were urged to have one with our son as well. So, on April 10^th, 2012 we arrived at Crouse Hospital in the early hours of the morning to prepare for our scheduled C-section.

Jacob William Thomas was born on Tuesday, April 10^th, 2012 at 9:40 am and was the most perfect baby I’d ever seen. He scored high on both Apgar tests that he had received and we both recovered well from the delivery. The night of Wednesday, April 11^th my husband and I had planned on our daughter spending the night at her Grandma’s house so that he could stay at the hospital with me. We were going to keep Jacob in the room with us that night, instead of sending him to the nursery.  For some reason he kept tossing and turning and was making this very odd grunting  sound, so at around 11pm I call for the nurse to bring him into the nursery and asked her to call me when he was ready to nurse around 1am.

I woke up around 2:30am and was surprised that I hadn’t heard from the nursery yet, so I called them and asked to have Jacob brought to my room, I can still hear her cheerful voice say, “Sure!”.  After about a half hour, I asked my husband if he thought they had forgotten about us. He said to give them a few more minutes and then we could call them again. About five minutes later a woman walked into the room, without Jacob. That was the moment that my life forever changed. She said:

“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.”

I remember her walking out of the room and asking my husband, “What did she just say to us? Did she say there was something wrong with his heart?” I didn’t believe it. Sometimes I still feel like it was all a dream.

When we woke up the following morning, we went to the Neonatal Intensive Care Unit to visit our little boy. The cardiologist met us there and said Jacob based on Jacob’s echocardiogram results, he had what was known as Cortriatriatum Dexter. Jacob had redundant tissue on his Inferior Vena Cava which was caused an atrial septal defect every time his heartbeat. This caused a right to left shunt through his patent foramen ovale and his blood was bypassing his lungs and going out to his body as blue blood. He even went on to say that once he saw the echo, he had to go back to his office to research what it was because he had never seen this type of defect before. The head of Pediatric Cardiology said that he hadn’t seen this condition since 1978. It was extremely rare.

I was told that the cardiologists wanted to keep Jacob in the NICU on oxygen for a few days and see if the condition would resolve itself. I knew in my heart that it wouldn’t. When Jacob was one week old, I met the cardiologist in the NICU at 8:00am (as I had slept there every night to nurse him and be with him) and he told me they discussed him at the conference that morning and that he would be transported by ambulance to Strong Memorial in Rochester for Dr. George Alfieris to operate on him the following day. I had gone through so many emotions that first week of Jacob’s life. From the initial shock and disbelief, to the devastation of knowing how serious his condition was and then the helplessness of knowing that our newborn was going in for open heart surgery. It was the scariest and most devastating time of my life.

On April 18^th, 2012, Jacob underwent open-heart surgery to remove the redundant tissue on his Inferior Vena Cava and was in surgery for approximately five hours. My husband and I were very quiet during this time. We were high school sweethearts and know each other better than anyone and we knew that there was nothing we could say at that time. We just had to wait and see what the surgeon said. I remember being in the wash room and splashing water on my face when I heard a male voice that was unfamiliar to me. Then it hit me, who it was. I walked out of the room and saw my husband standing with Dr. Alfieris and he said, “He’s perfect! You’ll never see me again!” I said, “Maybe under different circumstances!”. Our baby did amazingly during his surgery and was discharged from the hospital five days later – one day before he was two weeks old.

Since Jacob’s surgery he has thrived in every way, shape and form. He is the most amazing, happy, active little boy and without even knowing, he has made a difference in the lives of all babies born in New York State. Jacob was the poster child for the Pulse Oximetry Bill in NYS. 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 my family and me. 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 I, it’s something that we will never forget. We just had a follow up cardiology appointment last week and in the elevator on the way out he walked over and I kneeled down and we held each other. I whispered in his ear, “I don’t know what I would have done without you.” It brings tears to my eyes saying this, but I really don’t know how I would have gone on without him.

As of today, Jacob is a healthy, happy and amazing 23-month old, who is stronger than he will ever begin to know.