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Infant mortality, death of a baby before one year of age, is a basic measure of public health – associated with maternal health, quality and access to medical care, socioeconomic conditions, and public health practices. According to National Vital Statistics from 2010, the US infant mortality rate of 6.1 deaths per 1000 live births, ranks us 26 of the 29 most developed nations in the world. Finland and Japan are ranked first with 2.3 deaths per 1000 live births.
According to the latest analysis, the US rate has declined to 5.9/1000 in 2015 data. The range within the US is 4.28-9.08. Comparing states, Indiana is ranked near the bottom of the United States in infant mortality with its rate of 7.2/1000. Since 1999 we have not improved at all in decreasing these rates in Indiana. There exist staggering disparities in mortality rates for African American babies, 13.26/1000 Indiana, 11.1/1000 US. The national data for rural counties is 6.55/1000 while urban counties 5.44/1000.
Because we care for our patients, within our communities, we treat patients and families who experience the tragedies that inform the statistics. I would like to introduce you to a very special family in my practice.
Kaleb was born Feb 8, 1999. Mom, dad, and big sister were excited and well prepared to welcome him into their home. We celebrated Kaleb’s good health during visits at the hospital and his routine wellness exams. At his 2 month visit, we discussed mom returning to work. She was ready with dad’s help and a licensed daycare provider.
A little while after that visit, when going through that day’s mail, I came across an ER report, with Kaleb’s name on it, describing a resuscitation effort in a hospital I did not attend. The report, dated April 15, arrived at my office May 28. I hurried down the dark hallway to the chart room to prove that this was not my Kaleb.
I called the phone number on the chart. Kaleb’s mom answered. I said hello and that I had in my hand a letter about Kaleb, but I think it is a mistake. She paused, then clearly told me that Kaleb had died. My sorrow was unbearable – how could I have not known? She said the hospital made it sound like they spoke to me. She thought I was reacting like many other people did to this news, by turning away.
Kaleb’s mom related the events of that devastating day. She said she picked him up from daycare, expecting to find him napping. Instead, she found him face down, limp, and not moving in his crib. She started CPR. The ambulance arrived shortly afterwards. Despite comprehensive efforts that continued in the emergency room, he was declared dead about 50 minutes after she picked him up.
Kaleb’s family dealt with all the arrangements and initially adjusted to this tragedy without me. But I needed to make sure the hospital did not make the same mistake in notification of another pediatrician upon the death of a beloved patient. I called the hospital many times before I found the right person. The ER director told me that he had a chance to review the case and it was his opinion that everyone there followed protocol. If a doctor is paged and doesn’t answer, they stop trying after several attempts. I asked how they found my pager number since I did not carry one. Why couldn’t someone have verified the number with the parents or called my office the next day? He said they did not have the personnel for that, plus they couldn’t try to call me for every one of my patients seen in the ER.
I want to honor Kaleb’s life. I am one of the few people that were able to know Kaleb well. It was important to me to offer ongoing support to this young family. Sharing in the joy of his life helped me remind his three sisters about their brother, someone I will never forget. The pain of the hospital system letting me down could not compare with the pain the family felt. They have all displayed incredible grace and hope as time has gone on.
Kaleb’s mom would like us professionals to know that she was disappointed in the daycare’s ability to be licensed yet, against recommendations, placed her baby on his tummy for sleep. The status of the crib seemed to be in compliance with standard recommendations, in that he was alone to sleep, and the space was uncluttered. Kaleb’s death may have been preventable if he were laid down on his back to sleep. One of the most difficult things to do is to know beyond a shadow of a doubt the true reason a death happened. There are times when we are not able to know precisely how or why.
Death investigations can take over 9 months to compile enough information to determine cause of death. The death scene investigation can be complex and complicated by emotional testimonials and disrupted scenes. Autopsy results may be conducted by personnel not specialized in infant deaths. Results of ancillary toxicology and genetic testing may take a while to return. And yet we must compile the statistics the best we can to learn what is implicated in the causes and begin to correct the problems.
Causes of death are largely attributable to: Congenital malformations, deformations and chromosomal abnormalities; Short gestation or low birth weight; Maternal complications of pregnancy; Sudden Unexpected Infant Death Syndrome; Unintentional injuries.
Safe sleep campaigns, campaigns to decrease maternal smoking and increase access to preconceptual and pre- and postnatal medical care have all shown successes in contributing to decreasing rates of infant mortality. In this issue of The Indianapolis Medical Society Bulletin, we will highlight some of those campaigns involving Indiana. Each one could use your support. Please inform us of other initiatives that you have seen work.
The other component of this story is the need to develop stronger commitments to advocacy, communication and relationships between health care providers, community resources and our patients’ families. By approaching the delivery of health care as a consolidated team we will be able to impact infant mortality rates in a meaningful way.