When Beth Pulsifer-Anderson’s newborn baby stopped breathing in the hospital nursery, doctors wondered if something was wrong. Perhaps baby Katie had vomited and choked; it was unclear what exactly had happened to the newborn. Beth was told watch her baby closely.
Katie was a little fussy during her first week at home. Although trying for her parents and toddling older brother, it still seemed within the range of normal for a newborn. But by week two, little Katie was clearly suffering. The whole family became exhausted from sleepless nights and endless days spent rocking, walking, and cajoling the increasingly miserable and inconsolable baby girl.
By the time Katie was four months old, it seemed she had figured out that food caused her pain so she stopped eating entirely and would only take occasional sips of water. Beth brought her to a new doctor who took the situation seriously and recognized Katie’s symptoms.
Katie was diagnosed with Gastroesophageal Reflux (GER). This explained her choking just hours after birth. Her cries of pain and nighttime shrieking were the apparent result of acid reflux burning her esophagus. The doctor and prescribed medication that made Katie a bit more comfortable.
Beth had her hands full caring for Katie and coping with months of sleep deprivation. She was also parenting her toddler, Chris, who was probably wondering when having a new baby sister would start being fun. Looking back, Beth thinks Chris felt lonely in those early months as most of her focus went to Katie’s special needs.
Beth had grown up in a “do-gooder” family. Her mom was a nurse and was active in local politics. Following in her footsteps, Beth had volunteered in high school for a visiting nurse service.
She and her husband Eric met while working for a community crisis hotline together in Iowa. Shortly before Chris was born, they moved to Washington D.C. Following Katie’s birth, they decided to pull up stakes and head back to Iowa to be near their families. But after relocating with a newborn and toddler, Beth and Eric discovered that the medical care their daughter needed wasn’t readily available in Iowa. Within months of arriving, they had to move once again – back to D.C.
They settled into a new house in an unfamiliar neighborhood and Beth had no friends nearby. Her parents would generously drive 8 hours once a month to help with the kids for a weekend and give Beth and her husband a chance to catch up on chores and sleep. In between those visits, they had very little hands-on support. Looking back, Beth says she “doesn’t know how they survived it.”
Beth vividly recalls a trip to the drug store for Katie’s medication. She was juggling a crying baby and wrangling her toddler who was sprinting down the aisles. The adult tablets she’d been given for Katie’s GER had to be ground up by a pharmacist and suspended in a liquid that Katie could swallow. Beth finally made it home with the precious liquid, opened the bottle and somehow Baby Katie knocked the entire $300 worth of much needed custom made-medicine off the counter where it spilled onto the floor. Fatigued and overwhelmed by the thought of repeating the drugstore experience again that day, Beth burst into tears. She picked up Katie and Chris, left the house and walked up to a woman Beth recognized as a neighbor. Beth begged her to take the children for a couple of hours. Though they had never met; the woman said “yes”.
“Beth thought, ‘what if a parent was in my shoes and reached the point where they just couldn’t take it one more day?’ She started researching crisis nurseries; places parents could drop off their kids and come back later when they’d had a necessary break.”
When Beth returned for Chris and Katie, the woman was shocked that Katie “cried non-stop.” This felt enormously validating to Beth; even for just a few hours, someone besides Beth and Eric had understood how challenging it was to care for Katie. They became fast friends, and the woman, also a mother of two, visited Beth daily after that first desperate encounter.
During one of Katie’s numerous hospital stays, a nurse promised to bring Beth a booklet that would explain “everything she needed to know” about managing GER in babies. Beth got bored waiting for the booklet and spent the next few days in the hospital making notes about everything she and her husband had learned over the last 6 months through trial and error and many sleepless hours spent translating esoteric medical jargon from dense clinical journals. By the time they were discharged, she’d written 16 pages detailing what she knew about GER. As she was leaving the hospital with Katie, a nurse handed her the highly anticipated GER booklet. It was three paragraphs long.
Convinced that there must be other parents struggling to handle GER with very little information, Beth put an ad in the paper announcing a GER support group. Doctors told her she would be lucky if she could find 10 people to attend – as GER was so “rare”.
Beth remembers that first support group meeting as a wonderful experience to be with other parents who understood “what it was like to have a very fussy, inconsolable baby.” They shared ideas, survival skills, and stories. Before long, forty people were attending the support group and they all “had something to contribute.”
For five years, the support group met each month. Beth helped train parents to start their own GER support groups in California, Virginia and Georgia. A friend told Beth about the Internet and said she needed something called a “website.” It was 1994 and Beth didn’t really know what he meant but he said she would “thank him later” and she said ok. He bought her the domain name reflux.org. Beth filed for and received non-profit status and began fundraising.
Katie was sick so much from GER related ailments like ear infections and pneumonia that Beth simply couldn’t work a 9-5 job. “To keep from going out of [her] mind,” she worked to expand the reach of reflux.org. She posted resources and information and created an online forum where parents could get 24-hour support.
The more she talked with other mothers, the more Beth noticed with them that GER seemed to run in families. Beth starting asking researchers how many families she would need to get together to study it. The response was usually laughter. They seemed to say, “you crazy moms….it’s not genetic!” recalls Beth.
Beth had gotten very good at persevering by this time and so she did. Finally, she and the other “crazy moms” got it researched and discovered the link for GER on chromosome 13. The results were published in the Journal of the American Medical Association.
She went on to spearhead and author other articles on GER. Beth has also been a tireless advocate for families affected by GER and has spoken at conferences and testified before Congress.
Beth thought, ‘what if a parent was in my shoes and reached the point where they just couldn’t take it one more day?’ She started researching crisis nurseries – somewhere safe that parents could drop off their kids and come back later when they’d had a necessary break. She found that were almost no such places. In her research she also learned that the three biggest factors in affecting whether a child is lethally injured by child abuse are the following: the child won’t stop crying, the child keeps throwing up, and the child won’t eat. Beth thought, “That describes my daughter!” She started working with child abuse prevention organizations to bring awareness to the issue and lobby for preventive services for overwhelmed parents.
Beth’s work has grown exponentially. Current estimates suggest that nearly seven million children suffer from GER. The 16 pages she scratched out in one of those early hospital marathons became the starting point for her book entitled, The Reflux Book, A Parent's Guide to Gastroesophageal Reflux. She is currently the Director of the Pediatric Adolescent Gastroesophageal Reflux Association (PAGER) and their web site at www.reflux.org gets 2.5 million hits per month. They just launched a Spanish language site at www.reflujoenninos.org.
Her children, Chris and Kate, are now 21 and 18. Beth thanks the “grace of her husband” for getting her through those challenging early years of parenting. She says she can still “read Katie like a book” and can tell when she is going to get a fever the next day by the sound of her voice. Beth describes Katie as “wise beyond her years” and says she has special sensitivity that her mom attributes in part to Katie’s medical experiences. Katie hates the idea of being a doctor but all of her friends call her for support when they have medical problems. Katie is currently trying to talk her mom into getting matching tattoos that say, “Like mother, like daughter.” (update from Beth – [my daughter] Katie got hers Saturday. The pressure is on! Where on my body can I hide a phrase that long??!! The phrase is MUCH longer in Arabic which is what she chose.)
Thank you, Beth, for sharing your Story with us!
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© 2009 by Jenoa Briar-Bonpane and Story of My Life
Even at age 4 Katie was cautious about new foods