I read my entire pregnancy. I had stacks of books and belonged to at least three online forums. I memorized a list of things to do to prevent SIDS and even educated my parent friends about infant safety. I never once stumbled across congenital heart defects. I remember the doctors talking to me about screening for things like Down’s Syndrome and other conditions. I remembered Cora’s heel being poked when she was born, full term and weighing almost 9 pounds. The doctor’s listened to her heart, but that was it. I learned from the autopsy report she was born with a murmur. No one told me. The doctor’s probably didn’t think much about it. Murmurs are common. I didn’t think anything could go wrong with her heart.
Dear Cora,
I know you were there with me that day. I took your picture, and I showed them while I spoke. I clasped the locket that contains your ashes as my voice trembled. But, just in case you missed some of it, this is what I told the members of the Indiana Senate Health and Provider's Committee hearing Bill 552.
Love,
Mom
Chairwoman Miller and ladies and gentlemen of the committee I'm honored to be here today. My name is Kristine McCormick, and I'm an Indianapolis resident.
On November 30, 2009, I gave birth to my daughter Cora. She was a full-term baby weighing 8 pounds and 10 ounces. I'd experienced a completely normal pregnancy and delivery. After delivery, Cora scored a 9 on both her Apgar tests.
One early morning, Cora woke up hungry. I fed her, like usual. I looked up at my husband for a split second and looked back down. Cora was limp, pale and not breathing. Cora was dead. We rushed her to the hospital. But, it was too late. We had no clue what took her life.
Two days later, the coroner called and for the first time in my life I heard the phrase, “Congenital heart defects.”
Sadly, I soon learned Cora wasn't alone. In the United States, 1 in100 babies are born with a congenital heart defect. CHDs are one of the top killers of infants under one, killing more babies than SIDS. It's estimated that less than 25 percent of CHDs are detected prenatally meaning thousands of mothers deliver a child not knowing something is gravely wrong with his or her heart. In fact, CHDs can go undetected until adulthood. Many of the athletes that collapse on the court have an undiagnosed heart defect.
Pulse oximetry screening can detect many of these defects, and generally detects the most lethal. Several research studies have looked at pulse oximetry in the newborn nursery and found a low incidence of false positives. I traveled to Washington D.C. last Spring to meet with the pulse oximetry team at Children's National Hospital, working on implementing pulse oximetry screening programs in nurseries across the country. Some hospitals have started screening every newborn through this program. In fact, every hospital already has the equipment. It's commonly used in NICUs, emergency situations and babies that are symptomatic. Pulse oximetry is a basic piece of equipment. Sometimes pulse oximetry is even referred to as “the fifth vital sign” because it is so standard. I was hooked up to a pulse oximeter the entire time I was in labor with Cora.
Pulse oximetry is cheap and costs less than a diaper change. Little to no training is required because the equipment is already in use. Staff members regularly work with pulse oximeters. Last night, I met with (name omitted) an associate professor of surgery at Indiana University. As a surgeon, he operates on children with congenital heart defects weekly. He explained to me that the earlier a defect is detected, the better the outcome for the child. He regularly sees children with developmental problems and neurological problems associated with late diagnosis. In the long run, pulse oximetry will save money. Early detection of CHDs improves outcomes for patients, saves money in hospitals stays and procedures, decreases developmental delays in children and most importantly saves lives.
CHD is much more common than any of the conditions screened for in currently state-mandated metabolic screening. In fact, CHD is the most common of all birth defects. Pulse oximetry is painless and quick, and even less invasive than current screening for other conditions.
Recently the Secretary's Advisory Committee for Heritable Disorders in Newborns and Children recommended to the U.S. Department of Health and Human Services that screening for severe CHDs be added to the traditional newborn screening panel nationwide. Other states are currently working on legislation for implementation of pulse oximetry screening this year.
By mandating pulse oximetry screening for every newborn after 24 hours of life, Indiana will take a huge step forward in fighting infant mortality.
No mother should find out about her child's heart defect from the coroner.
Hope this post made at least a few more people aware today. I know it changed me.
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