To confirm the diagnosis we visited an ENT specialist (Ear Nose and Throat). Turns out that baby G wasn’t only shrieking upon inhaling, but also while exhaling. The PA (Physician’s Assistant) told us that laryngomalacia presented only while inhaling, not exhaling, and that the shriek-while-exhaling action may be a symptom of something obstructing his airway below the voice box.
The doctor confirmed what the PA said, and decided to submit baby G to various tests in order for him to determine whether surgery would be necessary. One of the tests was a round of X-rays at only 10 days old. My husband and I were devastated. He was so little! Will the radiation be damaging to his little body, brain, or organs? The doctor described a single X-ray shot as having the same kind and amount of radiation as a flight from Boston to Los Angeles. Well, each X-ray round is composed of two “shots” (one from above, one from the side). So that’s a round trip to and from Los Angeles right there. Then it turned out that baby G’s jaw was blocking his voice box on the picture, and the X-rays had to be done again. Another round trip. After those, the ENT was still not finding anything conclusive, so he called on the expertise of the radiologist, who recommended a “live X-ray” which is a pulsed X-ray that takes a quick succession of pictures, like taking an X-ray movie, to see his throat while he breathed. I have no idea what this means in terms of intercontinental flights, but my little baby just went through a WHOLE LOT more radiation than just a flight to Los Angeles, I tell you that much! I couldn’t stop crying the entire time. My poor baby!!!
The doctors didn’t find any masses or anything structurally wrong with baby G’s throat (best case scenario). We still don’t know what the shriek-while-exhaling meant, but the doctor could not confirm nor deny that he was just making baby noises. The doctor also put a tiny scope into his mouth and down his throat to “watch” the tissues above his voice box folding in a manner consistent with the condition, but he said he did not see it. Baby G was crying a lot during the scope, which is supposed to worsen the condition and make it easier to see, but even then the doctor was unable to confirm it visually. He ruled out more severe conditions, and hence gave us a 98% confidence that this was a typical case of laryngomalacia.
For a month we watched baby G like a hawk. Every time he made a noise that was not consistent with his already-noisy breathing, we would jump up and watch as he regained his breath. “Is he breathing?” was the question we kept asking each other when one of us checked on him. The answer was always Yes.
By our second visit with the ENT, at 4 weeks old, the doctor *was* able to see the tissues fold in a manner consistent with the condition, and he basically said his laryngomalacia was progressing as expected (getting “worse” before getting better). He said baby G would be a perfect candidate for surgery, but considering he didn’t have any complications and he was thriving, there was no reason to recommend it at this time.
It’s worth noting that baby G never had any problems feeding. He would latch on and not let go until he was done. This is different from typical cases of laryngomalacia, where babies have trouble breathing through their noses and have to unlatch to catch a breath frequently, and in consequence end up having weight problems.
Also, baby G did not appear to suffer from acid reflux, which tends to make the condition worse. We asked the ENT if he could see any irritation in his throat possibly due to acid reflux, and he said he could not, however, he would not assume that means he doesn’t have acid reflux. To us, baby G seems to have this silent kind, where you can hear him swallow whatever came up, but he’s never been a spitting-up baby. His PCP gave him a prescription for Prilosec just in case he was having silent reflux. We gave him a couple of doses, but my uncle, who is a GI doctor, said he would not give that to his kid, especially if he wasn’t spitting up.
The reason is that many infants end up with a prescription after parents tell their doctors that the baby cries a lot. You see, “colic” is not really a diagnosis. It’s just a catch-all term to explain why babies cry. So, as a catch-all diagnosis, acid reflux is blamed in most cases and the infant ends up on medication. Even if the baby actually had acid reflux, it’s perfectly normal for babies that age to have a certain level of reflux to help their GI systems mature, and it really doesn’t burn them like it burns adults because they don’t produce as much acid at that stage. So we decided to discontinue the drug, and just treat him with gripe water instead.
Still, just in case he does have the silent kind of acid reflux, we started having him sleep propped up at a 30 degree angle, face up. We started this after visiting the ENT (10 days old, about). My mother-in-law purchased this bed for him called a Nap Nanny (before having this, we would have baby G sleep in a car seat). It works alright. It’s comfortable, and his laryngomalacia is almost completely silent when he sleeps in it. He is a snorer, though, which is great because I take comfort in hearing his every breath.
This was a very emotional time for me and my husband. When one of us broke down, the other one had to put on a strong face. All the while our family members (his mother, my parents) continued to “try to encourage us” by saying that those were normal baby noises, and there was nothing off with the way he was breathing. I tried not to take it personally, as if they were saying that we were crazy and overreacting. I tried to think of it as “they are helping us feel more at ease,” but I wish they had acknowledged our conclusions, and just said that everything was going to be ok.
It didn’t help that my husband kept on reading forum entries from parents whose babies had the worst possible case scenario of laryngomalacia, and who explained how their babies lips turned blue when they couldn’t breathe, or how they had to take them in for surgery multiple times, or how their babies died of asphyxiation. My husband was a wreck. We joked that there should be a website called “And Everything Turned Out Fine.com” where people could chronicle their experiences with disease or medical conditions, and everything was OK in the end. It would have been much more encouraging than reading all the bad stuff.
Now, 2 months later, baby G is doing fabulously. He’s thriving, and has gained almost 4 pounds since his lowest weight after birth. He’s proven to be very strong, and we know he’s going to be ok 🙂
Aaaaaaand, everything turned out fine 🙂
ina
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