We were at the height of dealing with my son’s acid reflux when his speech therapist said to me, “It’s a monster.”
Acid reflux is a monster. That describes it perfectly. It’s constantly lurking after a meal ready and waiting to attack. Before its onset, I can see the fear of impending doom on my son’s face. We all brace ourselves hoping to get through the next couple of hours without losing too many calories. Only to do it all over again at the next mealtime.
Most people are familiar with reflux, also called heartburn. It’s common in infants and pregnant ladies. It’s medical term is Gastroesophageal Reflux Disease (or GERD) and it’s a condition where the stomach contents do not stay in the stomach below the lower esophageal sphincter, but end up coming back up the esophagus. The stomach acid wreaks havoc on the esophagus, the tissue becomes very inflamed, and it is incredibly painful.
Although GERD is common, it is sometimes hard to diagnose in babies and can be even harder to treat. Silent reflux means that the patient doesn’t exhibit any symptoms. In these cases the refluxed material may come up the esophagus and go back down, or come up and can be swallowed or aspirated. Even if a child isn’t vomiting, other GERD symptoms may include: the sound of stomach contents coming up, hiccups, frequent swallowing, back arching, or just lots of screaming during and after a meal.
During my son’s two month NICU stay we tried to understand if the pain he was experiencing was related to GERD. The neonatologists and nurses had conflicting opinions. He wasn’t an easy read and he had a lot of other issues at play as well. After he was discharged, it took a few months for me to feel certain that my son was indeed struggling with GERD. He was, for the most part, a silent refluxer. On top of that he is tube fed. I was constantly questioning whether his pain was related to how the food was going in, as well as, his other medical complications.
An esophagogastroduodenoscopy (EGD) and impedance probe study revealed that he indeed was refluxing severely. Not only was his esophagus effected, but his duodenum (first part of the small intestine) was also severely inflamed. Over his short three and a half years we have tried nearly everything to relieve his symptoms and heal his inflamed esophagus. We’ve trialed both Histamine 2 blockers (H2 blockers), which tend to relieve symptoms temporarily, and Proton Pump Inhibitors (PPIs), which are designed to lessen acid production over time. We tried a medication to help sooth the lining of his esophagus. We tried another drug to help move food through his digestive tract quicker. We did a panel of allergy tests. We tried gas drops, essential oils, lemon water, and even apple cider vinegar. All with mild success. We kept him upright and hostage in his high chair after a feeding and angled up one side of his bed when he slept. We limited his activity in attempt to keep the food down. That just made everyone miserable, and it became increasingly clear to us that he was not outgrowing GERD like a lot of children do. Something more drastic had be done to help eliminate his pain.
This fall we decided to go ahead and give him a Nissen Fundoplication, a surgery which wraps the top of the stomach around the esophagus to prevent any food and stomach material from coming back up and further eroding the lining of the esophagus. It took us a long time to get to the point of taking surgical measures to improve his GERD. The downsides to the surgery are not being able to burp, vomit, and in some cases, eat.
Now that we are a couple of months post-op, I am glad we went ahead with the Nissen. Once he got through the initial recovery period, which involved retching and some feeding intolerance, he is doing much better. I can let him out of his chair to play after a meal. He is still able to burp. And he has begun taking more volume of food by mouth! For a tube fed child this has been huge. Granted he’s not eating for volume, but his throat doesn’t hurt and he has less fear of pain with swallowing and eating. He certainly feels better.
My little guy has a sensitive stomach. He probably will his whole life. I see still him writhe with tummy and gas pain from time to time. I have found that a natural herbal remedy containing activated charcoal does wonders to relieve his tummy pain.
Moms of preemies and medically fragile babies may have to work harder to understand what is going on in their babies’ tiny bodies. Not every child who struggles with GERD will be forced to chose surgery, but if you do, I hope you are encouraged by our story. It hasn’t been easy. It was hardest when he was in the NICU and newly home from the hospital. The more I understand my child and his condition, the better I am able to help fight the big scary GERD monster. I am happy to say that right now, the monster has been scared away.
Has your NICU baby experienced GERD? If so, what has worked in helping eliminate your child’s GERD symptoms?