Our daughter Hannah was born 11/22/17. She's our fifth baby and a welcome surprise caboose for our family. At 6 days old she was diagnosed with a rare condition called cricopharyngeal achalasia, also known as cricopharyngeal hypertrophy, bar, or narrowing. It is a congenital defect involving the upper esophageal sphincter muscle that is too large and impairs the swallowing process, kind of like a pinch in a hose.

At 8 days old Hannah underwent a procedure to dilate her esophagus and reduce the muscle with Botox injections, but unfortunately, the procedure was unsuccessful. On March 16 she had a myotomy of the muscle, and she is now able to swallow. After 4 months on a feeding tube, she is finally able to eat by mouth.

This is her story that is still being written.

Monday, January 8, 2018

Perspective

by Ellen Sorenson

Hannah with
Grandma Sorenson

Watching Hannah’s journey to health, I keep reflecting on the lives of my ancestors. My grandmother lost four babies before my mother lived. Perhaps they died from the RH issues that led to the death of my own infant sister, or perhaps an infant suffered as Hannah does with an esophageal muscle constriction which left her unable to swallow or to breathe without choking. My grandmother told me that one infant son died because “he was just too smart; you could see it by looking into his eyes.”
Exceptional care at Utah Valley Hospital
In an earlier generation, there were no oxygen monitors to alert sleeping mothers when their babies needed air. Babies like Hannah simply died—suddenly when they couldn’t breathe or slowly because they couldn’t eat. There were no diagnoses. No barium swallow studies with x-rays to reveal a constricted throat. No manometries to analyze esophageal function. And there were no solutions—no carefully calibrated portable NG feeding tubes, no home oxygen canisters, and no drugs to counteract influenza and fevers and seizures. There were no surgical balloons, Botox shots, or myotomies to ease over-enthusiastic muscles.
Sadly, in much of the world today, little has changed. In our recent time in Nicaragua, we lived among wonderful people who lost newborn babies because of lack of intervention during labor and delivery and elderly parents to lack of access to dialysis treatments. We knew an eight-year-old who went to a dentist with a toothache, and the dentist pulled out a permanent molar. We saw people who were crippled because they did not have fractures set or who were bedridden or demented by severe anemia.
Volunteer groups providing meals in the Ronald McDonald
Family Room at Primary Children's Hospital
I am so grateful to live in a society that places the highest value on the life of one helpless infant and that has the resources to save her life. Hannah has interacted with dozens of caring nurses, doctors, ambulance drivers, technicians, and volunteers. Jenny and her family have been fed and sustained by the Ronald McDonald house, Boy Scout troops, and various church congregations. And behind the scenes there are untold hundreds of researchers, inventors, and manufacturers and distributors of medical supplies. There are unseen angels intervening from Heaven, friends nearby who offer dinners, babysitting, and rides to the doctor, and strangers across the country who pray for a little baby they have never met. There are truly Christ-like people who will surely reap great blessings. For Jesus taught, “In as much as ye have done it unto the least of these, my brethren, ye have done it unto me.”

3 comments:

  1. I have thought of your Gram. Knowing what is wrong and having the means to help her is such a miracle.

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  2. I want to add to my mom's beautiful sentiments by saying that my first 3 babies, Leah, Samuel, and Audrey, are all Rh positive to my Rh negative. Meaning that without Rhogam injections during and after my first three pregnancies, neither Samuel nor Audrey would have survived birth. Lexie and Hannah are both Rh negative and would not have had any problems.

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  3. Such a beautiful post! I have heard Ellen talk of her ancestors many times and I know that the connections through family are very real. I am sure that they are praying for Hannah also. Babies are so fragile and life is so precious. Miracles are occurring each day whether we realize it or not. Barbara Gibson

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