If Babies Could Talk: Quality of Life Issues

A recent study assessed the health-related quality of life issues faced by adults with Gastroesophageal Reflux Disease (GERD). A high number of adults listed sleeping and eating as significant quality of life issues. Further, adults with GERD indicated that they experienced poor symptom control despite medical treatment. A significant number of study participants used over the counter GERD medications in addition to prescription medications. Not surprisingly, survey participants indicated that doctors and patients disagreed on the severity of symptoms and GERD treatments.

Certainly, if you spend any time on the internet, you know that many adults with GERD are struggling to find the best treatments to control symptoms as they struggle with a significant burden to their quality of life. At the same time, babies and their caretakers are struggling with similar issues.

When a baby has severe GERD, eating and sleeping quickly become the central focus of a very long 24 hour day. Caregivers spend hours preparing meals and formula, mixing and giving medication and burping. This is followed by holding the baby upright so the food that was so carefully prepared and slowly consumed doesn’t come right back out again. Feedings often take place every few hours, round the clock. Once the feeding is finished, it is time to settle the baby for sleep. Often it takes special swaddling, rocking or swaying to settle the baby. Sleep is inconsistent and there is frequent night waking, fleeting naps during the day and no schedule for sleep or crying spells. If babies could talk, they would certainly rate eating and sleeping as central quality of life issues.

They might say:

Eating is such hard work for me.
I am so hungry but when I start eating, the food comes up and the pain is awful.
I try not to eat too much but some days even a little is too much.
Formula mixed with acid tastes awful.
I am so tired but I just can’t turn off the pain and go to sleep.
I wish that I could nap all afternoon but the acid in my throat woke me up.
Thank you for rocking me-I know you are trying to help me.
I am not trying to be naughty by waking you up at night.

If babies could talk, they would say that the medical treatment helps most of the time but not all of the time.

They might say:

The medication helps during the day but at night, I just can’t sleep.
The medication helps a bit but I am still having pain when I eat.
Please tell the doctor to help me feel better.

What do you think? What is your biggest quality of life issue? Feeding? Sleep? Something else? How are you dealing with these issues?