Musings of a Marfan Mom

J’s Fluoroscopy, & What Moms Should Know About Aspiration

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Tuesday Baby J had a fluoroscopy. Because he sometimes chokes/coughs when he nurses (about once a day now, but previously at every nursing session), his pulmonologist wanted to rule out aspiration. We also needed to check to make sure his diaphragm is moving because if it wasn’t, that would be an indicator for surgery for his eventration.

The test was actually a lot shorter than I thought. Two speech therapists took us back, strapped J in a slightly reclined chair, and had me feed him some barium mixed with applesauce (he insisted on putting the spoon in himself, of course). Then they gave him some liquid from a bottle (formula? I’m not sure.). They had an x-ray type machine next to them so they could watch where the fluid was going as J drank. Then, to check his diaphragm, we laid J out on a table and I held his arms up while a tech held his legs down and the doctor pulled an x-ray screen over him. That lasted about 30 seconds.

Good news? Baby J’s diaphragm is moving. Aaaand, that’s all I know. Literally, the doctor said “it’s moving, Mom!” and walked out of the room. Guess I didn’t have any questions? I’ll ask the pulmonologist more about that at J’s appointment next week. Bad news? J is penetrating when he nurses. In very layman’s terms, when a baby aspirates, that means the fluid is going down the wrong pipe. When the baby is penetrating, the fluid starts to go down the wrong pipe but ricochets off the wall and back down the right pipe. Baby J’s penetration is consistent and of moderate severity. The speech pathologist said she believes J was aspirating for quite a while and is slowly outgrowing it, which is why we’re seeing penetration now.

I feel awful. I’ve had the sense something wasn’t quite right for awhile, but could’t figure it out. J’s symptoms were so nonspecific that I think it was easy for the pediatrician to brush the choking aside and even The Twitter never thought of aspiration or penetration when I discussed my concerns. I’m sorry that I didn’t know to ask about this specifically, because I can’t imagine how uncomfortable feedings have been for him.

So, I want to make sure all you moms to babies, especially moms to Marf babies, are aware of the symptoms. Lactation consultants, please take note too! 1) J choked/coughed when nursing…at first at every feed and now just once a day or so. Sometimes it’s just a sputtering and he unlatches and is fine. Other times he appears to be totally unable to breath and we have to sit him up quickly and pound his back. 2) When we started him on a bottle he resisted the “age-appropriate” flow nipple and we have had to use one for a younger baby. 3) J now pulls off the breast (or bottle) after just 2-3 sucks. This appears to correspond with when he’s having a penetration. It makes nursing take forever.

These symptoms can be a normal part of nursing, when they occur at an age-appropriate time. If the mother has an abundance of milk with a strong letdown, a baby may choke at the beginning of a nursing session. As babies get older, they go through periods of being curious and become very distractible at the breast. These should eventually stop though. They didn’t for J though, and that’s why I’d been feeling uneasy.

I’d imagine that aspiration and penetration are relatively uncommon in otherwise typically developing babies. However, if your baby is showing the above symptoms and no other explanation seems to fit, ask the pediatrician whether a fluoroscopy might be in order.

As for J? Since the choking is mostly happening at night when I think he is too sleepy to pay attention, the speech therapist suggested I try to preemptively pump off some of the foremilk, since the hindmilk is a bit thicker and therefore less likely to be penetrated. Then, for the middle of the night feedings, I should break the latch 3 times early on before letting him suck (I’m not quite sure why this one will work, but I’ll give it a shot). If those don’t remove the choking I’m supposed to call the speech therapist back for Plan B.

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5 Comments

  1. Just curious, and I apologize if I sound stupid … but does changing his position for feeding make a difference. i.e. more upright instead of laying back? Poor fella. Choking or partial choking is a nasty feeling.

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    marfmom Reply:

    Nope! I asked that. The speech therapist watched me nurse him and said he’s actually feeding in the best possible position.

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  2. Hey I’m glad you got some answers. Don’t feel bad about not catching it earlier! No matter how well versed you are in medical matters you can’t expect to know or catch it all. You’re a good mom and you advocate for yourself and your kids more effectively than most do.

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    marfmom Reply:

    thanks

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  3. First – what a cutie pie! :)
    Every time we get an answer on something (starting with our ASD diagnosis), I always kick myself for not going to the doctor sooner. But like you said, sometimes we just can’t put our finger on it so we dismiss it.

    Great job following through, and educating other parents!

    [Reply]

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