Letters to the editor of the Boston Globe Magazine
Readers share their experiences with SIDS, a September 11 book excerpt stirs painful memories, and more.
The Agony of Losing an Infant
Reading Eric Boodman’s article (“State of Grief,” March 31), I was hit with a mixture of intense sorrow and intense anger. I have no idea if the people who worked for the medical examiner’s office are still there but shame to them. As a former emergency medical technician, you learn how to do your job not only efficiently but with compassion. I understand the volume that the examiner’s office faces and to many it becomes just a job. But, when it comes to infants and children, these employees need to remember the parents. To the High family, my deepest condolences. Your loss was made worse by the way you were treated by those who should have known better.
Added to this inconceivable tragedy for these families is the lack of state resources dedicated to understanding what has transpired in this and similar cases. A wealthy state like Massachusetts should be able to find the resources needed to understand how and why a sudden infant death happened, and to find ways to prevent it in the future. Let’s properly fund our public health agencies so that they match our amazing health care facilities in knowledge and expertise.
I was disheartened to find a picture [of a redesigned nursery showing] a crib with bumper pads and a loose blanket in the same issue (Your Home: Casual Elegance) with a beautiful story about SIDS. The American Academy of Pediatrics has been strong in its recommendations about safe sleep: a firm mattress with no soft objects such as loose bedding, pillows, blankets, bumper pads, or toys. A plain, empty crib certainly isn’t as attractive as the one pictured, but it is safer!
As director of nursing for an emergency room, we always supported the parents, stood by them explaining what was happening if the team was trying to resuscitate the infant. We supported them as they held their baby, closed the curtains, dimmed the lights, and played soft music to try and pretend it wasn’t an ER. We took a lock of hair, did foot or handprints, made a memory book, and gave them a disposable camera so that they could take pictures.In one case police told the staff that the exam room was a “crime scene” and that no one could be in there or touch the infant. The family was distraught and angry. I had to call the chief of the local police so the parents and staff could go through our customary comfort practices. We always told parents that we carry the infant to the morgue bundled up to stay warm — and that we would leave the light on. I carry these stories, parents, and babies with me.
Anne Elizabeth Barrett
Thanks to Boodman for writing with such compassion and for preserving the Highs’ dignity. I appreciate his illuminating the hardship and abandonment that can befall families who are already suffering from the loss of a child, simply due to the stigma. I cried AND I feel better informed.
I lost my only child, a son, decades ago and am in my 70s. I had cancer that required a hysterectomy less than three years later. I smoked and drank before I knew I was pregnant. He was with a sitter for only the second time in his less than five months of life that day. Did she put him face down? It goes on like that ever after: What did I do wrong? Did I kill my baby? So all these years later, I still feel that grief, have a huge hole inside, and have struggled with depression much of the time since.
Port Angeles, Washington
I recommend that police receive sensitivity training on this topic. Have a police chaplain on call who can guide all involved. Put a task force together as part of national accreditation for police and health care providers. Most MDs and police personnel receive no training on this. They are very clumsy and awkward. Consider putting together a critical incident response team to tackle these difficult cases and review how they were handled. This is a difficult story but common. Rattle cages!
Dr. Christine L. Medlin
Virginia Beach, Virginia
Our first child, now 37, was a “near miss” SIDS infant. He suffered awake apnea in my wife’s arms in the hospital. The first episode was witnessed only by her, so it was not taken seriously even though he stopped breathing, went limp, and turned gray. The second and third episodes occurred with the nurses. He subsequently had consults from a cardiologist, had a spinal tap, had a consult with a pediatric neurologist, and finally a neonatologist. He was monitored for several months and alarms went off but he grew up to give us two wonderful grandchildren. We know how lucky we are.
Kieran T. Mahan
Medford, New Jersey
My son Henry died on January 31, 2013. He was perfectly healthy at 8 months, 2 days old. He did not wake up from his morning nap, and we found out after he died that the day-care provider placed him on his belly to sleep. My husband and I, along with other SIDS parents, worked with the Arizona Department of Child Safety to make a safe sleep PSA. Thank you for making it clear that sleep position is a risk factor, not a cause of death. I’m amazed how many medical professionals don’t understand that concept.
The tragedy of having a child die is hard enough but the added layers of prolonged waiting for official answers, phone calls, letters of parental exoneration are only added insult to an indescribable injury. One light in the darkness is a little known but global support group called The Compassionate Friends, where we don’t focus on the “how” of our children’s deaths but on the “what now” that the families are left to figure out. At monthly meetings we can be supported by others who have walked in our shoes and with whom we can relate only too well.
I was moved to tears twice — once over the Highs’ loss and again over the cruelty of how they were treated. I was also angered over the callous remarks and actions of those in charge. This story seems impossible in a city such as Boston with all the educational institutions and progressive thinking. Something must be done about the deplorable way the system treats bereaved parents. Perhaps this story will move people to demand change.
In the years since our first son, Christopher, died of SIDS in 1989, my husband and I have followed SIDS research findings, and the Back to Sleep campaign, closely. While we were immediately connected with grief support via what was then the SIDS Center and through the Massachusetts General Hospital neonatal intensive care unit (where Christopher ultimately was taken off life support) and did not experience the painful lapses the Highs endured, the arc of their grief mirrors ours, and that of other SIDS families we came to know. The desperate isolation that comes with losing a baby to SIDS, even rarer now, needs to be put into a factual context, given a platform, and accorded the respect of our public health agencies. This September, Christopher would have been 30. His life taught us the depth of parental love; his passing forever transformed us.
A Look at September 11
How thoughtless and outrageous to print the excerpt from Mitchell Zuckoff’s book (“We Have Some Planes,” April 14). For anyone who lost a loved one on that flight, choosing to buy and read the book is one thing; but having that chilling excerpt delivered to their home with their Sunday paper was beyond comprehension.
Stories like this must continue to be told. Yes, it’s terrifying to read and painful to remember but we must always be reminded [of] the people we lost. Nor should we ever let diminish the impact it had on America and the world.
posted on bostonglobe.com
What Kids Need From Parents
Excellent Perspective (“What Students Want from Parents: A Veteran Teacher’s View,” April 14)! As a former high school teacher and mother of four, I experienced parenting from two perspectives. It is difficult at times to take a step back and let your child make his/her own choices and experience success and setbacks. It is unfair to set unachievable expectations, which in the long run will have negative effects.
As a former high school teacher and a parent, I found David McCullough Jr.’s piece to be a precise analysis of what kids need. I was told not to bother with going to high school as a ninth-grader; I was failing most of my subjects. I went anyway and ended up being a teacher. Life is fraught with irony. I was last in my high school class. I was gifted by the indifference of my parents and teachers at age 15, because it forced me to be responsible for the hand I was dealt. Good for the Globe for running McCullough’s glaring take on what parents should look at while guiding their kids.
Joseph V. Houlihan Jr.
Narragansett, Rhode Island