5 Realities Of Having A Child With Organs Outside His Body

5 It Changes The Way You Raise A Baby

We weren't allowed to hold our son for two weeks. All I could do was watch as highly-trained doctors in perfectly sterile rooms smiled at me, an unshaven idiot in mismatched socks, and promised that I'd eventually be allowed near this tiny bundle of horrific medical complications.

My wife and I gradually took over parental duties. First, they taught us how to change a diaper. It was a two-person job -- one to make the change, and one to hold his guts. My very first diaper change was done in the shade of my son's own liver. Suck on that imagery, T.S. Eliot.

Diaper changes are gross no matter how many extra body parts are involved, but how many parents have to change an organ sac dressing? The doctors did it at first because the risk of infection was high, but after a few days, the membrane got scabby, like your knee a week after skinning it. Here's another photo, if you're brave. So twice a day we would cut off the dressing, clean the sac, apply new gauze, and wrap it all up. Before long, we were pros, casually cradling our child in one arm while his intestines rested on the other. Even simply holding him had a learning curve. We couldn't sling him over our shoulder, because then his belly would compress against us and we'd get all tangled up in stomach.

To treat an omphalocele, you wait for enough space to grow so the organs can be stuffed back in where they belong, like making room for seconds on Thanksgiving. In the meantime, parenthood is one long panic attack. We were sent home with a tiny inside-out child on supplemental oxygen, a feeding tube, and positive thoughts.

4 The Treatments Are Laughably Low-Tech

While we waited for our child's torso to expand to the point where it could hold all his squishy bits, we had a preposterous number of appointments at the hospital. So how do you transport a child with a weak spot a Zelda boss would find insultingly obvious? Is there some special car seat designed by NASA? It turns out the hospital employs a craftsman to make equipment for unique situations. Our tiny son was measured, prodded and slathered with plaster. Soon afterward, we received a hard plastic bubble we could strap over his belly before putting him in his car seat. He was weirdly okay with this.

What he wasn't okay with was the Wedge. Whether they like it or not, kids need to spend time lying on their stomachs. This makes them lift their heads, push up with their arms, and do other tasks you dread but find necessary when the remote is across the room. To facilitate tummy time, the hospital's mad fabricator whipped up the most technologically advanced tool imaginable: a foam wedge with a hole in it. Every day, we'd strap him in his bubble and lay him on the Wedge. And every day, he'd shriek like a rusty engine powered solely by its hatred for me, my ancestors, and humanity in general. Logic would dictate that eventually he would get tired or his misshapen lungs would fail him. But logic had already abandoned us.

After about eight months, it was time to start the closure surgery. But if you're picturing an intense 12-hour operation that demanded perfection straight out of a medical drama, prepare to be disappointed. The doctors sedated him and opened up the sac. They attached the sides of the sac to a mesh, which they suspended from a bar above his bed. And then, every day, little by little, they would squeeze the organs into his body like the world's most horrific tube of toothpaste.

See those blue threads? After a day of playing my son like an accordion, they sewed it off and repeated in the morning. Once all his guts were back where they more or less belonged, they closed him up and weaned him off the many, many drugs he was on. And that's how I can proudly say that my kid kicked methadone before his first birthday.

3 The Secondary Issues Are Worse

Having half your organs swaying in the breeze with nothing but a fleshy sweater for protection obviously complicates other matters. For starters, this kid vomited all the time. We'd spend an hour getting him to drink two ounces of baby formula, hold him perfectly still for another 45 minutes, and then, just when we'd allow ourselves a glimmer of optimism, he'd vomit all over our hopes. And us. And the dog.

One day, my wife went to get lunch and the head nurse went on break. My son decided that would be the ideal time to teach daddy what an asthma attack looks like. Alarms went off. I ran into the hallway to look for help, but it was as empty as the beginning of The Walking Dead. So I took matters into my own hands -- and by that, I mean I sheepishly yelled out that I needed an adult. The backup nurse came in, sounded another alarm, and from out of nowhere a crew of five people emerged. My wife chose this moment to return, understandably wondering what I had done in 20 minutes to break our already mostly-broken kid. They got him stabilized, but despite several follow-ups with the pulmonologist, we never determined the cause. A surprising amount of childhood medical issues are chalked up to "We dunno. Gremlins?"

Even three years later, there are issues. He's mostly normal now, but there are always reminders. He's still tiny, and might always be. But his head is average, so he looks like an "i" written by a 14-year-old girl. We're constantly trying to feed him, but there's only so much you can do. We'd cram him full of deep-fried Snickers if there was any indication he'd prefer them to broccoli.

His lungs are still probably the wrong shape (long and narrow, because they had no constraints while developing), but they work. Other organs are in the wrong place. If I hit you in the gut, you'd be winded but suffer no real damage, because the area behind your belly button is occupied by your flexible and shock-absorbing intestines. But in my son's body, that place of honor is occupied by his liver. So I'm going to flip out every time he gets hit in the stomach. And like every kid featured on Cracked, he's probably going to get hit in the stomach and called a nerd for it. Still, I can't complain, because ...

2 His Survival Was Both A Miracle And Routine

I'm in my mid-30s, so if my Facebook feed was your primary news source, you'd think we were in the midst of a baby flood that would devastate the Earth. But aside from the occasional early delivery, I didn't know of many pregnancies with complications. Turns out motherfuckers are lying about their healthy kids. When I told people about our situation, a good third of them nonchalantly said something like "Oh yeah, Brent was born with detached kidneys," or "Alice's ear was stuck to her knee," or "Rebecca had to get her stomach pumped because she ate her unborn twin. Now she's competitively eating at a third-grade level."

Science-ing away freakishness is the routine.

We got luckier than a leprechaun in a brothel. My son was a best-case scenario, relatively speaking. Twenty years ago (or today, if we didn't have insurance), there's a good chance he wouldn't have made it. When we got the diagnosis, we talked to genetic counselors, cardiologists, surgeons, and enough other specialists to Gattaca up a kid wholesale. Together, they compiled a long list of potential complications. There could have been genetic defects, heart and circulatory problems, respiratory issues, and delays or permanent lapses in physical and mental development. One by one, all those problems got crossed off the list.

It took a hell of a lot of work. We had weekly meetings with a physical therapist, bi-weekly with a dietitian and surgeon, and a few nervous ultrasounds that confirmed the blood supply to his organs was sufficient after closure. And we're not done yet. We're still doing physical therapy, because he holds himself to one side and has stiff movements. But he's miles ahead of where he was even six months ago, and he's constantly improving. Most importantly, whenever we meet new people, his health issues are no longer the first topic of conversation. By most accounts we have a normal three-year-old with a badass scar. That works for me.

1 In The Long Run, It's Surprisingly Easy To Live With

We also wanted to know what it's like living as an adult who had an omphalocele, but we weren't willing to wait 15 years to interview, and our Time Travel division is busy getting high on the couch and watching Doctor Who. So we also talked to Jonathan Calvaruso, who had his surgery in 1987.

Jonathan's case was severe. He was born six weeks early, only weighed four pounds and 11 ounces, and various complications ensured that he spent the first six months of his life in an incubator. Doctors only gave him a 10 percent chance of survival, but despite all that, Jonathan's now doing great. In his words:

"Every once and a while I'll get a twitch in the scar, and that's really it. I've had zero side effects. I've lost a little bit of intestine, but I've had no bowel problems, no complications. I can run, I can jump, I can do sit-ups. It doesn't limit me at all."

Equally importantly, it doesn't bother Jonathan mentally: "It hasn't changed the way I live at all. It's fun to tell stories and talk about it. It's definitely something where it's easier to talk about it than try to hide it. I've always been the first person to take my shirt off at the beach. It never bothered me, and I don't think it ever will. If it bothered someone else, that's their problem."

And like anyone else with a cool scar, Jonathan takes every opportunity to mess with people. May we suggest samurai attack?

"I like to make up stories. You can get people to believe anything. I've made shark attack stories up on the spot, friends go along with it, and people believe it."

Every case is different, of course. All of Jonathan's organs are in more or less the right place, while the same can't be said for my boy. But he's living proof that most children who survive an omphalocele will have minimal problems, and only the biggest and baddest cases cause lifelong complications.

I don't know what the future holds for my son, but I think it's cool that he'll grow up in an age in which half his organs can try to ditch him and doctors consider it an inconvenience. Hopefully, the biggest complication he'll experience is having to come to terms with the fact that his dad told his story to the entire Internet. And hopefully, he'll agree that it was worth it.

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You can follow Jonathan on Twitter, and read more from Mark on his site.

Ready for the other side of this equation? Find out why people will always bring you their poop when you're a microbiology technologist in I Diagnose Your Diseases: 7 Horrifying Realities. Or find out what life is like when you're pretty much Mr. Fantastic in 6 Weird Realities Of My Life With An Awful Superpower.

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