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Letter to the Editor: Pulse Ox Newborn Screening Would Save Lives

Small hearts can oftentimes conceal big health and medical challenges, especially when it comes to critical congenital heart disease (CCHD).

As the parent of a baby born with this condition, I know firsthand the devastating effects that heart disease can have. According to the American Heart Association, nearly one in three infants who die from birth defects have a heart defect.

We could save these tiny lives if newborns were appropriately screened for heart defects before being discharged from the hospital. Using a test called pulse oximetry; we can detect low oxygen levels in the blood — a significant indicator of heart issues in babies. Sen. Marty Block has introduced Assembly Bill 1731 to help babies live longer and fuller lives. This simple, non-invasive test could significantly improve the outcomes for thousands of California children. The screening costs about $3 per newborn, according to a large, Bay Area hospital already implementing pulse ox testing.

Moreover, the cost of preventing one baby from having complications if not detected early enough overrides the cost of screening 10,000 newborns. I encourage the California Senate Appropriations Committee to vote aye on AB 1731.

Below is my story and just one reason why we need to support this bill.

My son Logan was born with a congenital heart defect, although at the time of his birth no one had any idea. None of the 3-D ultrasounds before Logan was born showed complications, nor did any of the doctors who examined him at birth find anything wrong. He was born a healthy 8 pounds 4 ounces with all of his fingers and toes. Perfect.

Logan’s adjustment into the world wasn’t an easy one, but we thought his fussiness was colic. At 2 months old, we noticed Logan’s skin appeared blue sometimes. His pediatrician ordered a pulse oximetry test to check the oxygen levels in Logan’s blood, which were gravely low. Local pediatric cardiologist Dr. Bilal Harake informed us that Logan’s heart was severely malformed and that he had the rare condition Taussig-Bing syndrome.

Logan was immediately airlifted to a hospital in Los Angeles that specialized in pediatric heart surgery. Our son’s chest was open for eight hours while surgeons made the necessary repairs to Logan’s heart. We were shocked, scared and confused. Logan recovered in the Cardiothoracic Intensive Care Unit for nearly nine weeks, during which time he had a pacemaker installed because he had developed a heart block from the invasive surgery. We finally held him again one month after the procedures.

Logan was born with a congenital heart defect, although at the time of his birth no one had any idea. (Elliott family photo)
Logan was born with a congenital heart defect, although at the time of his birth no one knew. (Elliott family photo)

After returning home from the hospital, life slowly went back to normal. Other than the scarring, you couldn‘t tell that anything had ever been wrong with him. We knew things were not perfect — some of the repairs still leaked, and having lived his first two months of life with a malformed heart left one side of his heart smaller and weaker than the other. However, we were confident that the worst was behind us and proceeded to enjoy the summer of his first birthday and him saying “momma” and “dadda.” When he was learning to walk, he would often scoot his way over and rest his head on my lap. There was something so endearing about this. Logan was gentle, loving and seemed to be so wise.

At 14 months, Logan became sick. He quickly progressed during the night, and when his breathing labored and his heart beat faster, we rushed him to the ER. Logan had become dehydrated, and while attempting to put an IV into him Logan went into cardiac arrest. They immediately began to work on him in an attempt to revive him but they could not. Early in the morning of Oct. 14, 2009, our son Logan died.

Losing our son has been extremely stressful on our family. The range of emotions we have been through has almost been unbearable and caused a tremendous amount of strain on our relationship. We are the lucky ones who were able to make it through the worst situation and be able to share our story to make a difference in the lives of others. We are currently pregnant, 35 weeks, and are gratefully expecting another boy. We are aware now of the complications that can come from undetected heart defects.

We will be requesting pulse oximetry screening when our child is born and a follow up every day before we leave the hospital. I hope pulse oximetry screening will be part of the practice of tests required when a child is born.

The main reason that I share our story is because of you, Logan. I share your memory. I stand here in honor of you. There is a tremendous amount of responsibility that comes in telling your story, because it truly is yours. I hope that I have told it well, and I hope that I have done you proud. I will always remember how brave you were. You inspire me every day. But mostly, I will remember how it was to be around you. I will never forget how amazing it was to simply be with you. You were beautiful, Logan, you always will be. I miss you so much! Mommy and Daddy will always love you.

I stand in support of a simple test that can be administered in the hospital before newborns head home.

Had Logan received pulse ox screening at birth, he would have received treatment to prevent his heart from deforming and the test might have prevented his death. The pulse ox test would not have hurled us into an emergency situation. The simple $3 test could have saved a $2 million bill for health-care services. The helicopter ride alone cost us $22,000. This was not only a financial burden on our family but also on the state’s health-care system.

Please view a video of Logan by clicking here.

I thank you for your consideration and encourage you to join us to help all newborns.

Heartfelt,

Rayme Elliott
Santa Barbara

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