Newborn surgery: Looking for some clarity/advice

About ten days ago, my cousin—who’s basically my brother since I don't have any siblings—had a son. The little guy hasn't even made it home yet because he's dealing with some issues regarding an enlarged colon. Honestly, I'm flying blind here. My cousin is either being super vague on purpose or he's just too much of an idiot to ask the doctors the right questions. I'm pretty annoyed about it.

Basically, the baby was moved from the maternity ward in San Francisco over to a hospital in Miami. The reason was that he hadn't had a bowel movement for four days, which is obviously a red flag, though he actually went during the drive to Miami. He's still being kept under observation. At the time, I figured everything was fine and people were just overreacting.

But today, I find out from my cousin that one of the IV lines popped out—one I didn't even realize was connected directly to his main vein (basically heading straight for the heart)—and now he has to go back into surgery to fix it. The operation started at noon and didn't wrap up until 8:00 PM because they couldn't get it right the first time. The kid was under general anesthesia the whole time.

This is all the info I could squeeze out of him. He honestly has no clue what's going on. Does anyone here actually understand what's happening? Why would an IV line be positioned that close to the heart? Why would an operation take that long? And what kind of complications are we talking about with an enlarged colon?

He isn't even two weeks old yet... 😢 He was a solid 7.7 pounds and 20 inches at birth... he's definitely not a weak little guy.

I gotta say, I'm a little surprised nobody jumped in here... I’ve usually gotten some kind of answer on Healthline whenever I ask something. But I see people have been reading, so thanks for that at least.

It looks like the issue might be a lack of nerve endings in the large intestine tissue, which is why things aren't moving through the system properly. We're doing a biopsy tomorrow, so the doctors will decide the next steps after that. One possibility—if things are bad enough—is just removing that section of the colon entirely. If that happens, it means the little guy would be under full anesthesia for the fourth time within his first month of life.😢

Poor little guy. I really hope everything turns out okay...

Nobody replied because that's a pretty complicated question, and we don't exactly have a ton of specialists on this forum who would know how to answer something like that.

Honestly, if only a doctor would weigh in here for once 😢

I have this hazy memory of an IV being run directly into the main vein when a child is actually being fed—it’s not just your standard, basic IV drip. I think the alternative is a feeding tube straight into the stomach, though I can't be entirely certain. Perhaps someone else with more clarity will chime in.

I really hope everything turns out okay. Obviously, heavy anesthesia isn't exactly ideal for a little one, but getting the surgery done is the priority here.

You might find a few pediatricians responding on some of those alternative medicine forums online; you could try asking there if you're feeling particularly anxious about it.

From what I can gather—and look, my history with hospitals is way too long and complicated to go into, so even though I’m definitely not a doctor, I feel like I know a thing or two about this stuff—when patients have a really hard time getting IVs started, they just go in with a central line... you know, right into that vein you mentioned that goes "straight to the heart." My mom actually needed one of those after the anesthesiologists couldn't hit a single usable vein, though we ended up not needing to go through with it in the end.

From what I was told, it’s a pretty quick procedure, maybe like thirty minutes tops. Is there any way it actually took eight hours for your little cousin? That sounds... I don't know, feels like someone totally botched the communication there!!!

It’s likely a case of megacolon, specifically Hirschsprung's disease.
Regarding the "tube" you mentioned, that’s a central venous catheter. It’s standard procedure to place one during any major surgery.
They insert it into the subclavian vein, which is only about 2 cm from the heart at this age. It allows the medical team to monitor blood pressure and manage fluid, electrolytes, and medication delivery.

To be honest, I’m not entirely sure which diagnosis we're looking at here... there's a possibility of anal atresia, since megacolon surgery usually happens a bit later in development.

As for that comment about why no doctors have weighed in yet... I wasn't aware there was an organized medical on-call rotation for this forum.😈

It’s possible there were issues with the catheter—maybe it punctured the subclavian artery, which would explain why such a small area required surgery. It's hard to say for sure without more info, but operations that run that long usually imply something complicated was happening.

Unfortunately, I can't provide medical advice through a message board... we can't do anything without reviewing the actual labs and seeing the patient in person. I simply can't diagnose anyone remotely.🙂
...just like any other surgeon wouldn't be able to.

nimbleskipper13 said:Unfortunately, you can't just do "consultations via mail"... without seeing the test results, we simply can't work with a patient... and I definitely can't do anything remotely. 🙂
...just like any other surgeon...

Mh... the little guy is in the hospital, and I trust the doctors are taking good care of him. I’m mostly asking stuff here just to calm my own nerves—I want to know what’s actually going on because my cousin is completely in the dark. For that same reason, I can't really give much detail either.

Regarding the surgery, all I know is they had to fix an IV line that had slipped out. It was supposed to be a quick procedure, maybe a few hours, but the first attempt didn't go through, so they had to redo it. That's exactly how I was told. So, it ended up lasting eight hours, and that was on the day of the strike when they were only handling emergencies.

And I'm not even sure why he needed the IV... I mean, he eats enough, his digestion works, and he's gaining weight, but there's the issue with the large intestine. Once food gets to that point, it just doesn't move because the colon doesn't react. Then he stops eating (every three or four days), and they have to use a catheter to clear him out, and then everything goes back to normal for a couple of days like he's the healthiest kid ever. I don't get why the IV was necessary at all. He did pick up some bacteria, so maybe that's related, but... I don't know.

I just don't have enough info...

frozencobra37 said:I simply don't have enough information to go on...

That’s really the bottom line here—without more details, there isn't much we can conclude.

However, there are a few facts to keep in mind:

1. In any case where bowel movements are obstructed, whether due to a mechanical issue or a neurological condition, parenteral nutrition is necessary.

2. For patients in this situation, all medications are administered parenterally.

3. Bringing up the doctors' strike is completely irrelevant here and feels a bit pretentious, so I won't even bother addressing it.

I am confident that the child is in good hands and that everything will turn out fine, but I have to mention something that seems totally disconnected from this post.
Essentially, the parent or the patient themselves is REQUIRED to stay informed about their health and the upcoming treatment plan. Likewise, the doctor is obligated to provide that information, giving the patient the chance to decide if they accept the plan or if they want to seek a second opinion.

Without that transparency, any further discussion is pointless.

In any case, wishing the little one the best of luck, and my advice to the parents is this: ask questions, and they will give you answers.
👋

I've already seen a few solid replies to your question, but I figured I’d jump in and share my own take too.
First off, it’s pretty tough to pin down exactly what’s going on from just a written description. There are some contradictions here, so I suspect there might be a bit of a game of telephone happening—whether it’s between you and your relative, or between the doctors and the parents... anything is possible.
Regarding this "infusion to the heart" thing... as mentioned before, that’s actually a central venous catheter. They can place those in the jugular vein in the neck, the subclavian vein under the collarbone, or even the femoral vein in the groin. When you say "the infusion popped out so they had to redo it," you're likely talking about a peripheral IV in the kid's arm or leg slipping out, rather than a central catheter, since those are always extra secured.
Technically speaking, central venous catheters can be placed by anesthesiologists (using direct percutaneous access) or surgeons (by prepping the vein and placing the catheter under the skin, like those Hickman catheters).
I’m almost certain the reason for the central line is parenteral nutrition—basically what people call "feeding through the veins." The other reason that pops into my head, I won't even mention because I doubt that's where the story is heading. It's worth noting that for true parenteral nutrition, a central venous catheter is absolutely NECESSARY. There has to be a really good reason to go through with this, as it's potentially a very risky procedure.
Plus, based on your initial post, it sounds like there's probably some kind of congenital digestive tract anomaly, which means the little one can't eat normally and needs nutrients delivered directly into the bloodstream. Basically, regular eating is somehow blocked.
What's throwing me for a loop in your story, though, is this part...

I mean, the little guy eats enough food, his digestion works, and he's gaining weight, but the issue is with his large intestine. Once the food gets to that point, it just doesn't come out because the colon isn't reacting.

...and this...

The surgery started at noon and didn't wrap up until eight at night because they didn't get it right the first time!

That first quote feels contradictory to me... how can he be eating plenty of food and gaining weight if he doesn't have a clear digestive path and normal bowel passage? And why would he need parenteral nutrition via a central line in that case?
And that second quote is wild... saying the placement of a central catheter took eight hours!!! In my experience, that shouldn't take any longer than an hour, so I'm guessing they were doing much more than just placing a catheter. If it was an eight-hour operation, they definitely had to do a lot more than that.
Keep us posted on what's happening over there... I'm genuinely curious to see how this all unfolds.👋

nimbleskipper13, I only brought up the doctors' strike because non-essential appointments were being pushed back that day. Based on that, I figured the surgery was an emergency, which just added to my stress. I wasn't trying to offend anyone here. I haven't said anything about the strike itself, the reasons behind it, or the doctors—none of that. If I sounded like I was judging, all I meant to say in my last post was that I trust they're in good hands, but I wanted to hear your thoughts just to ease my own mind. Sorry if I came off the wrong way..

As for the rest, what exactly is parenteral nutrition? Is that just feeding through an IV?

Regarding the info we have... the thing is, my relative has heard enough from the doctors to know there's something wrong with his large intestine and that surgery is necessary. He’s asked plenty of questions and gotten some answers.
What I'm really trying to figure out is what the specific issue is and how it's actually treated.

Scott Allen10 said:That first quote feels contradictory to me... how can he be eating enough food and gaining weight if his digestive tract isn't clearly open and bowel transit isn't normal? And on top of that, he's on parenteral nutrition through a central line?
The second quote sounds unbelievable... an eight-hour procedure just to place a central catheter!!! In my experience, that shouldn't take any longer than an hour, unless there was something else going on with the placement. I guess for an eight-hour surgery, they definitely had to be doing much more than just that.
Keep us posted on what's happening over there... I'm really curious to know the specifics.👋

I'm not talking to the doctors, I'm talking to a relative, and trying to get info out of him is like pulling teeth—it's like he's guarding a state secret. He'd honestly rather not talk about anything or answer any questions. I get where he's coming from, but I still want to know what's actually going on.

What is certain is that the little guy is eating regular food, because we get updates every day like "he had 50ml for lunch" and stuff like that. Whether he's getting supplemental nutrition via IV, I don't know, but he's definitely eating some things normally. And his mom is staying at the hospital with him, if that matters.

I really have no clue about the specifics of that surgery. All I know, like I said before, is that it was supposed to take a few hours but stretched to eight. Maybe my relative misunderstood and meant the kid woke up at 8 PM, but I'm just guessing since you guys were so surprised... you've got me a little worried now. I think everything is okay, I just want to know... Scott Allen10, and that other thing you didn't want to comment on...

I'll definitely write back when there's more news. They should be doing a biopsy tomorrow, so maybe we'll get some more answers then.

Oh, one detail that might matter to those of you who know this stuff: instead of a biopsy, they were considering using X-rays (which seems weird to me, maybe they said 'imaging' and my relative misheard) to track food passage through the whole system; it was supposed to take about eight hours, but they couldn't do it because the little guy isn't even four kilos yet, which apparently is some kind of limit.

nimbleskipper13, Scott Allen10, and everyone else, thanks for all the posts.

Look, we aren't trying to be difficult, but based on the very limited information your cousin shared with you—which you've relayed here—anything we say is just guesswork.

Parenteral nutrition involves delivering fluids and nutrients directly into the bloodstream.
However, direct access to the bloodstream is also necessary for administering medications, such as antibiotics or anesthesia during surgery...

Try to find out what the working diagnosis actually is.

If there’s a suspicion of megacolon or a congenital lack of myenteric nerve endings, doctors will perform a bowel biopsy to determine if that deficiency is present.

Now, I might say something here that upsets you, but even though I know you mean well, please respect the parents' right to decide what they want to tell you and how much they share...
Some people prefer to keep both illness and joy to themselves. There's no need to lecture or judge them; just try to understand and offer help if they ask for it.
🙂

I mean, there’s really no point in getting worked up... I get where people are coming from. I might have been a bit too quick to say I partially understood him, but this kid is family through and through—close to me, my parents, even my grandma, since he's her first great-grandson (assuming I ever decide to have kids myself). Honestly, nobody here is an expert on this. That's why I don't push for answers; I just leave it to the older folks who know what they're doing... though maybe it would actually help if I sat down and had a real talk with him.

We'll see how it goes..

I realize I'm not giving you guys enough info to actually make a diagnosis. But I don't really have anything else to add. Thanks for trying, though.

nimbleskipper13 said:No, now I’m going to say something that might actually annoy you: setting aside the fact that you clearly have the best intentions, let's give parents the right to decide for themselves what they want to tell you and how much...
Some people just prefer to keep their joys or their struggles to themselves... there's no need to lecture them or judge them, we should just try to understand... and offer help if they ask for it.
🙂

I don't know anything about medicine, so my comment isn't really about the baby's illness or treatment.
That’s basically what I was trying to get at earlier!
When my oldest daughter was 14 months old, she ended up in the hospital. She had a fever of 104 for an entire week that just wouldn't budge with any medication, her blood work was a total disaster, and in the end, even the doctors couldn't figure out the cause.
Back then, I could only talk about her illness, the treatment, and our time in the hospital with my mom, and maybe a little bit with my husband. I just didn't want to talk to anyone else—not family or friends. I was feeling too vulnerable to go through it with a whole crowd of people. It was like everyone else just got blocked out.
If my child is sick and in the hospital, that's all there is to it. There are no answers for questions about what's wrong or how she's being treated.
My daughter is a perfectly healthy high school senior today, but even now, I still get this tight feeling in my throat whenever I think back to that time. I still don't like talking about it.
You know your relative; he's not the type of guy to be so heartless that he wouldn't care about what's happening to the baby. And as for his wife, I can only imagine how she's feeling.
Please take this the right way, but this is just how it is for some.
Some people sit in a corner like a wounded animal, while others feel the need to involve the whole community so everyone sees how hard things are.
It seems like your relative and his wife fall into that first group.
Just tell your relative he can always count on your help no matter what he needs, and let him know you won't pester him with questions.

I find myself nodding along with what nimbleskipper13 and jadesailor14 have already laid out here, though I would add one more perspective to the mix. It is entirely possible that parents at this stage are making a conscious choice to remain in the dark, simply because they realize how little agency they actually have over the unfolding situation. On a practical note, I would strongly advise against any attempts to bypass the parents to contact the child's medical team. Seriously—do not try to pull any strings or call the hospital through some mutual acquaintance just to get an edge.

I mean, I’m not really asking anything. Honestly, everything I know comes through my dad. He was talking to a cousin of ours. I only exchanged a few sentences with him, mostly because I didn't want to push too hard. Hospital stays were never even on the table, even though a close relative of my mom works there. I guess it’s pretty obvious this is primarily their private business, and it’s up to the parents to decide how much they want to share and with whom.

As for the cousin's wife, I have no idea how she's doing since she hasn't come back from the hospital yet. She was at the maternity ward in San Francisco, and then she and the little one headed down to Miami (basically, they wouldn't take her to the ER, so my cousin just drove her in the car 124 miles — the wife had a C-section a couple of days prior) and she still isn't home. All I know about her is that food isn't an issue since the hospital serves vegetarian meals. I suppose that falls under the category of "saying something insignificant just to say something."

It was Hirschsprung's disease. Basically, about an inch and a half of the bowel was missing its nerve cells. They did an ostomy the day before yesterday, and the plan was to move to a colostomy once he hit around six months.

The little guy passed away this morning. 🙂His uncle didn't even get a chance to see him...

Thanks to everyone for checking in on this thread.

🙂

damn

Oh God!?

🙂 🙂