Pediatric Gastroesophageal Reflux and Shaken Baby Syndrome
This is the text of a draft article submitted to the National Exchange Club for their magazine, The Exhangite. The Exchange Clubs are service clubs whose members are dedicated to child abuse prevention with particular emphasis on Shaken Baby Syndrome (SBS).
Same Song, Different Verse - Unusual focus on Child Abuse / SBS Prevention
The Exchange Clubs of Capitol Hill and Bethesda/Chevy Chase Maryland recently heard presentations about a unique program to prevent Shaken Baby Syndrome. The Pediatric Adolescent Gastroesophageal Reflux Association (PAGER) wants to prevent child abuse by preventing difficult babies and toddlers from driving their parents over the edge. If we can get the babies to stop crying and vomiting, we won’t have to worry as much about a caretaker losing their temper and shaking the child.
Beth Anderson, founder of PAGER Association, got interested in Shaken Baby Syndrome prevention in an unusual way. Mrs. Anderson discovered her calling after the birth of her second child, a girl named Katie. At first Katie appeared healthy but it quickly became apparent that she couldn’t keep her food down and she was diagnosed with gastroesophageal reflux (GER). This is the same thing that adults call acid reflux and it often sends them running to an emergency room with such severe pain that they think they are having a heart attack. GER is equally painful for babies and Katie spent most of her first year screaming and throwing up.
GER is not usually life threatening but Katie had severe complications of GER and almost died twice in the first six months. The first time she choked and stopped breathing and the second time she developed aspiration pneumonia when stomach acid got into her lungs. Mrs Anderson vividly described the three years of sheer torture that her whole family endured until Katie’s digestive system matured and she no longer needed "24 hour intensive care parenting."
As a result of her experiences, Mrs. Anderson started a small support group in 1992 and it has grown to be an international organization helping thousands of parents each month. During the past six years pediatric GER went from being thought of as "quite rare" to "one of the most common childhood disorders." In fact, experts believe that one in twenty otherwise healthy babies may suffer from GER but it is under diagnosed.
So how does GER relate to SBS? When Anderson first heard about SBS it was from reading an article written by Jaycee Showers, MD. The article was about the "triggering events" that lead to SBS. Anderson was horrified as she read that the most common "reasons" that family members cite for shaking a baby are excessive crying, vomiting and refusing to eat. All of these are extraordinarily common in children with GER and Anderson had long suspected that these children were at high risk for being abused.
No scientific studies have been done that officially connect GER with SBS but there are studies demonstrating that children with handicaps or chronic medical conditions are more likely to be abused. Anderson has spoken to hundreds of parents who say that the stress of caring for a child who cries constantly from GER is unbelievable. Quite a few of the parents who contacted her admit that they have fleeting thoughts of throwing the baby out of a window. And the scary part is that all of the mothers who have said this were upper-middle income mothers with husbands who help and they are well aware that their children were crying because of pain.
Anderson tells stories that illustrate the stress GER can cause a family. One mother who was a trained therapist was totally bowled over by the stress of caring for a screaming infant with GER on top of her two preschoolers. Several families have had grandparents and nanny’s living in the house just to help take care of the fussy baby. Unfortunately, it seems that these babies simply drive every adult in the house to the brink of insanity. The saddest story involves a mother who couldn’t care for son with GER and continue to hold her minimum wage job. He was 18 months old when she finally gave up trying and placed him for adoption. He had a six year old brother.
Most babies with GER cry incessantly and most of them vomit dozens of times a day. But Anderson says she feels sorriest for the babies who experience so much pain when they eat that they simply stop eating. Her daughter Katie did this and it was very hard to watch. "How can you feel successful as a mother if you can’t even feed your baby? It breaks your heart to see these babies and their poor mothers." If she hadn’t had a healthy toddler, she would have believed that she was doing something wrong. Some of the doctors obviously thought she was doing something wrong and their disbelief was very insulting.
After her discovery that the symptoms of GER are the same as reported triggers for SBS, Anderson got in touch with SBS prevention organizations. She joined the Montgomery County, Maryland SBS Prevention Committee and offered to help with a local awareness campaign. This past fall Anderson contacted the Exchange Clubs and explored ways that we can work together. She was also a speaker at the National Shaken Baby Syndrome Alliance conference.
In working with SBS and other child abuse prevention programs, Anderson has found a way to blend her mission with ours. Early SBS prevention efforts focused on defining this type of abuse and bringing it to the attention of legal investigators, police and emergency medical practitioners. Subsequent efforts focused on professional awareness and public awareness and now have progressed to encompass prevention programs of various types. Some of these prevention programs focus on high risk parents and anger control issues. Some programs go one step further and teach parenting skills and "normal kid behavior" so that parents expectations will be more realistic. Anderson urges parenting skills teachers to take a small step further and mention that some babies do not behave "normally" at all - nobody would ever say that a child deserves to be abused but some babies would try the patience of a saint.
Anderson urges every professional to keep in the back of their mind that a frustrated parent could actually be describing a hidden medical problem or behavioural issue with the child. And we also need to be aware that some parents are not lacking in basic parenting skills, they need very advanced skills to deal with their unusual children. Some children are very high maintenance and telling a parent who has one of these kids to use measures like "count to 10", "take a break" and giving the child a "time out" are simply not enough for extreme cases. Whether the child has colic, attention deficit disorder, a physical handicap or is in pain, the parent needs to learn that there are special techniques for dealing with these special situations. Professionals may need to go out of their way to help these stressed parent find places where they can learn specific, advanced skills.
Anderson is obviously a great believer in support groups for parents whose children have special issues. She wishes that professionals understood their value better and parents would view them more as great fountains of useful information and less as "a bunch of whiners."
Because the Pediatric Adolescent Gastroesophageal Reflux Association is very small and operates on a tiny budget, Anderson has asked the Exchange Clubs to help in spreading her unusual message. She urges us to supply copies of this article and the other web pages about GERD to parenting skills teachers everywhere.
For further information, PAGER Association can be contacted by e-mail at firstname.lastname@example.org; on their web site at www.reflux.org; by mail at PO Box 7728, Silver Spring, MD 20907; or through their voice mail at (301) 601-9541.
Remember, fathers and mothers need as much practical advice and as much sympathy as you can give them PAGER has long worked with the child abuse prevention community on the theory that alleviating crying and food refusal will reduce the risk of our children being harmed by a parent who loses control. In 2004 the unthinkable seems to have occurred. The father of a baby with reflux is being charged with the child’s death. http://pittsburghlive.com/x/tribune-review/s_369685.html Remember that all parents and baby sitters should be warned of the dangers of shaking a baby.