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Spencer's Story - looks can be deceiving

by Grace H. on Monday, August 11, 2014

Written by Amy Norton, Spencer's mom

You NEVER think “it will happen to you” but… “it” happened to my family, my son. At only ten weeks old my son was fighting for his life. This is his story…

Spencer was born at home, on 11/08/13, with a team of experienced midwives. He was a healthy 9.1lbs., and appeared completely typical. He was perfect. Absolutely perfect. Except he had a secret, Congenital Heart Disease. He kept this secret for a long time. Almost too long.

At 24 hours postpartum, our midwives came back to our house to check on Spencer. Again, everything appeared typical, no physical signs of distress. Therefore, no oximeter was ever placed on him.

On day 7 Spencer was seen by our family doctor. Again, he appeared typical. He was back to his birth weight. Latching on and eating well. His body was doing an amazing job at compensating for his lack of oxygen. Too good of a job. No one ever thought it medically necessary to check a “healthy” boy’s oxygen level. So, he continued to hold on to his secret.

December 21st, Spencer caught his first cold along with my husband, daughter and myself. We got better after a few days. Spencer stayed sick, in fact, he was getting sicker. Worry set in.

I took Spencer back to the doctor.  He was now 8 weeks old. At this appointment I expressed my concern about his cold. I emphasized that something didn’t seem right. I asked, “could it be allergies or asthma?” I didn’t know to ask if it could be heart disease, I wish I did. Spencer had only gained 6 ounces over his birth weight. STILL no oximeter was placed on him. I was advised to come back in two weeks. However, Spencer didn’t made it two weeks.

My husband and I had had enough. Spencer was still sick, his skin started to look dusky and we knew something was wrong. We called the local children’s hospital and spoke with a consulting nurse. She immediately said to call 9-1-1. The medics arrived. This was the first time an oximeter was placed on my son!  He was now 10 weeks old.

Trauma began. Things progressed from a phone call to an airlift in a matter of hours. Before we knew it, we were standing over our happy baby in an induced coma at Seattle Children’s Hospital. This is where, literally, at the eleventh hour, we learned of Spencer’s secret. Our sweet boy was born with Congenital Heart Disease.

Things quickly went from bad to worse! ONE day after getting our son to the hospital he was placed on life support. He remained in the hospital for 6 weeks. Fighting for his life.

If an oximeter was placed on Spencer at 24 hours old, he never would have got as close to death as he was. Yes, he still would have had heart disease. Yes, he still would have needed open heart surgery. But he never would have suffered the way he did. If my husband and I were not advocates for our son I am afraid his outcome would have been different. An unbearable reality.

An oximeter test is so simple. It saves babies lives! As a mother who has lived through the unbearable, I ask, why is it not a statewide requirement that every child not tested? No matter where a baby is born in Washington, it should be protected from a tragic story like Spencer’s. Spencer is a miracle. We are blessed he survived. NO baby should suffer like him, not when it is so simple to detect.

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