Where to start, what to say and how to respond when talking with loved ones about Infant Reflux

Mary Kaufman, LCSW
September 2006

It is human nature to want to make people feel better when they are distressed. When a loved one is having difficulty, typically our first response is to tell them that “everything will be okay”. Perhaps you’ve been the person who’s said this to someone and you’ve felt it was appropriate. However, perhaps you’ve also been on the receiving end of this comment and you felt angry, confused or brushed off. Why is it that the things we think will help the most often put more distance between us and the person we’re trying to console? We’ll pick apart some common comments made to parents/loved ones of GERDlings to determine why it is they’re not as helpful as we think. We’ll also suggest some alternate ways to show our concern, along with ways to deal with unhelpful comments (when you’re the one who needs empathy).

1. “Well, at least s/he’ll grow out of it”.

It is a fact that some children outgrow reflux/GERD. It is also a fact that some don’t. Parents of GERDlings know that there is no magic age at which their child will outgrow all of the awful symptoms and problems that GERD brings.
** If you’ve ever said this to someone, think about it this way: You probably know what it’s like to have heartburn. It’s painful and you probably reach for the nearest antacid and swear to yourself that you’ll never eat whatever food you think caused it again. Now, imagine that you’re a baby and that the heartburn lasts day in and day out. Imagine the taste of vomit constantly in the back of your throat from refluxing. Imagine feeling full to the point of bursting constantly and imagine that eating feels like you’re trying to ingest fire. Imagine constipation so bad that it makes you vomit when you strain to relieve yourself. Had enough? Now, imagine being the parent of that baby—who listens to screaming day and night, who doesn’t have an article of clothing or a piece of furniture that hasn’t been spattered with projectile spit up, who stays up half the night trying to console a screaming baby, who attends countless appointments with specialists, maintains a rigorous medication schedule and has to keep detailed logs of feeding intake, BMs, etc. As that parent, when you hear “S/he’ll outgrow it”, you’re hearing that this is just some phase that your child will outgrow. You’re NOT hearing empathy for just how hard things are NOW. Sure, we can all look to the future and imagine how rosy things might be; however, in the present reality, things are pretty tough and it would be nice to have that acknowledged.

**If you’ve ever said this to someone, a better choice might be, “I’ve heard that kids can outgrow this, but it must be miserable when they’re going through this.” Or “Does your doctor have any idea what’s causing this or if there’s any way to make him/her more comfortable?”

**If someone says this to you: An easy comeback is to say, “Yes, and that will be great. However, right now, it’s pretty difficult to deal with.”

2. “But s/he looks healthy to me”

It is a fact that many refluxers look perfectly healthy. Unfortunately, it is also a fact that many people with terrible illnesses also look healthy. We would never question a cancer patient’s diagnosis because s/he “looks so good”. While GERD is not the same as cancer, very serious damage can be done to the GI tract if left untreated—no matter how healthy or happy a baby looks.

**If you’ve ever said this to someone: You might consider saying something like, “You must be working very hard to keep him/her so healthy despite all of his/her issues” or “What a beautiful baby—I am so sorry s/he is suffering like this”.

**If someone has said this to you: A good comeback is to say, “S/he really is gorgeous; however, the reflux is really causing damage to his/her esophagus”.

3. “My baby/toddler was a picky eater, too” or “S/he’ll eat when s/he wants to”

Unfortunately, many refluxers will develop oral/food aversions because it is so painful to swallow or eat. The difference between picky eating and food aversions is that picky eaters simply don’t eat foods they don’t like; however, they will happily snack on things they like (Chocolate cake, cookies, milk, etc.). A child with a food aversion will literally starve him/herself to avoid the pain of eating. Children will go days without taking formula or food and often end up losing weight and/or being admitted to the hospital for dehydration. Many refluxers end up seeing feeding specialists in conjunction with their GIs in order to slowly help them overcome their fear of eating. Some children’s aversions are so severe that they require feeding tubes. This is NOT the fault of the parent and cannot be viewed as normal behavior.

**If you’ve ever said this to someone: You might consider saying something like, “I can’t imagine being in so much pain that I wouldn’t want to eat. This must be so hard to watch.” Or “I never knew a baby would do this—what is your doctor doing to help?” This lets a parent know that, even though you might not fully understand WHY, you are still being empathetic. It also acknowledges that there is a problem and doesn’t make the parent feel as if they have to defend the diagnosis.

**If someone has said this to you: A good response is to say, “S/he is being followed by a _________specialist who has confirmed that this is a very serious issue. It’s different from just being picky—it’s called an aversion and many children with GERD develop this”.

4. “GERD sounds like a made-up diagnosis” or “Babies didn’t have this in my day”

Babies have probably always had reflux; however, doctors today are just much better at diagnosing GERD and related problems. Just like other diseases (cancer, etc.), medical science is much more sophisticated at being able to diagnose problems that might have been missed in past generations. When the parent of a refluxer hears this, it can further make them feel alienated or might make them feel as if their baby’s problems are “all in their head”. Parents need reassurance when their child is sick, even if people don’t truly understand what’s going on. When a parent hears this type of statement, it really sounds as if the speaker is telling him/her that they don’t believe the diagnosis exists or is accurate. This can quickly put a person on the defensive.

**If you’ve ever said this to someone, you might consider saying something like, “Wow, it’s amazing that doctors are able to diagnose things like this now” or “I’ve honestly never heard of this before—tell me more about it.”

**If someone has said this to you, a good response might be to say, “It’s a blessing that medical science is now able to pinpoint what’s going on. Otherwise, we wouldn’t know why s/he’s suffering.” Or “It’s always existed; however, doctors didn’t know what was happening and often mislabeled this type of problem as ‘colic’. I’m so glad they’re able to diagnose these things now so that we can help our baby.”

Points to remember:

As stated before, it is human nature to want to make those around us feel better when they’re hurting. The problem is that we don’t often quite know how. Here are a few things to remember when talking to parents of GERDlings (or anyone who’s having a rough time).

1. Minimizing the problem won’t help anyone.
Instead of trying to make people “look on the bright side” or making statements like “This will all blow over soon”, try simply saying something like, “This must be so hard for you”. Sometimes there’s nothing more comforting to someone in need than hearing that another person empathizes with their suffering. Making light of someone else’s misery just puts them on the defensive and makes them feel more depressed.

2. Don’t be afraid to ask questions and ask BEFORE doing research for a parent.
Most parents of GERDlings welcome questions and don’t mind explaining their child’s diagnosis and treatment plan. Since children can present with different symptoms, suffer from different complications and often receive different treatments, it’s much better to talk to the parent(s) to find out what’s going on than to research on your own and come back with advice/information that might not be helpful.

3. Even if you were a perfect parent, try to refrain from assuming that you can make a child eat/cure his reflux/get him to sleep through the night.
It is so frustrating and depressing to have a baby who doesn’t do any of the things that other “normal” babies do. Parents of GERDlings deal with gallons of puke, tons of laundry, babies who awaken all through the night for months longer than “normal” babies, babies and toddlers who would rather starve than eat, etc. it’s easy for a sleep-deprived parent to start to blame him/herself for the baby’s issues and hearing comments from a friend or loved one that insinuate the child would do much better under their care can be devastating for a parent.  It’s hard not to want to jump in and take over, usually out of an intense desire to help. If you truly want to be helpful, offer your services to the parent(s)—ask if mom wants you to throw in a load of laundry, cook dinner or clean the bathrooms for her. See if mom or dad would like to take a nap while you watch the baby for awhile (just remember to follow their guidelines for eating/sleeping!). These things are so helpful to an overwhelmed GERDling parent and your willingness to pitch in will not go unnoticed!

4. When helping out with the baby, be honest about his/her behavior with you.
As stated in # 3, parents of GERDlings face many challenges that can cause self-doubt. If you are asked to help care for a GERDling, be honest about what happens while the baby is in your care. For instance, if your loved one’s GERDling is a non-eater, DON’T tell mom and dad that the baby ate “just fine” for you if s/he really didn’t. DON’T fib and try to make parents feel better by saying the baby didn’t cry, slept like a log, etc. if the baby really didn’t. This just undermines a parent’s confidence and further fuels their self-doubt. It’s also not helpful if parents are keeping careful records of their child’s caloric intake, sleeping patterns, etc.  Being honest is really the best policy, no matter how much you really want to put the baby’s parents at ease. It’s so much better to tell a parent, “Johnny was pretty fussy today, but he is such a doll. I’ll watch him anytime”, or “I’m so sorry—Jane just wouldn’t eat her baby food; however, she did take 3 oz. of formula while you were gone. Is this what she normally does for you?”.

Raising a GERDling can be a harrowing experience for parents. You can make their jobs easier by being a good listener, being honest, asking questions, and empathizing with their situation. If you’re ever in a situation where you don’t know what to say, simply say just that! “I am at a loss for what to say—I feel so badly” is sometimes all a parent needs to hear.