Personally, I’d advise you to reconsider. See if you can convince your baby to have a normal heart. Taking care of a heart baby is harder than taking care of a regular baby, and taking care of a regular baby is the hardest job there is in civilian life.
Having said that, if your child balks at your request for them to magically repair their heart, it’s better to go into it with eyes open. Here are the things you’ll face, above and beyond normal baby care:
Being an amateur OT and PT
For most at-home parents, playtime with the smoochy little morsel is an oasis in between the daily grind of baby care and its attendant bottle parts, its diapers, its laundry, its housebound isolation smelling the fervent aroma of used cat litter.
Not much idle playtime for you, I’m afraid. Your little heart warrior is developmentally delayed from weeks of vegetating after multiple surgeries, so playtime is serious business.
Being a Billing Manager
It’s not a secret that the health care delivery system in the United States is jacked up. One horseman of the apocalypse in this monkeyf—d system is the inordinately high cost of medical care.
I call Jack the 2 Million Dollar Kid (behind his back, of course).
That’s because, as of this writing, Children’s Hospital of Philadelphia has billed our insurer, Cigna, a little over $1.8 million for the Munch’s care. Don’t believe me? I’ve attached a screenshot from our online EOB.
The kid’s 7 months old. If, as hoped, he lives a relatively normal lifespan, you could easily take that 2 million and add another zero onto it.
I imagine there’s a secret lair at health insurance companies, in which a blaring siren and a big red flashing light go off when they receive notification that one of their customers has just been diagnosed with a congenital heart defect.
At that point — Code Red or DEFCON 1, or whatever you want to call it — an A-team swings into action.
It starts during pregnancy, if you get a diagnosis in utero as we did. You’ll be contacted by a case manager, who will offer to be helpful.
If you’re paranoid, as I am, or you’re instinctively suspicious of insurance companies, as I am, you’ll have second thoughts about talking to this person. Maybe they’re a spy.
Regardless, you’ll then be bombarded by your insurer with surveys which you must fill out, asking you if you have any other health insurance. It’s the health insurance version of “Are we there yet?”
The frequency of these mailings begins to take on a desperate quality. You’ll recognize the surveys by their distinctive flat envelopes. When they arrive, you’ll mentally scratch at least 30 minutes of your life you’ll never get back.
Cigna also sends out surveys asking if your child’s disability was caused by an accident (Sorry, Cigna. I think I know where you’re going with this).
After the field where you can indicate ‘No,’ the survey asks you what kind of accident caused your child’s disability (I just told you it wasn’t caused by an accident. You can’t get a congenital heart defect from a car crash, anyway, idiots. That’s the “congenital” part).
Because the online survey doesn’t have an “N/A” option, you have to fill out and submit the snail mail survey so you can scribble graffiti all over it.
Regardless, both the online and snail mail versions of the survey require you to enter your auto and homeowner’s insurance information each and every time the goddamned thing comes to your house and even though you’ve already told them that, unless they mean “accident” in the metaphysical sense, your baby doesn’t have a heart defect because of a frigging accident.
Pardon me. It’s a little frustrating. Not mad at you.
Then there’s Medical Assistance, which is whatever form Medicaid takes on in your state.
If you have primary health insurance, MA becomes your secondary insurance. What MA will cover as secondary insurance depends on your state.
If you don’t have primary insurance, MA will keep your baby alive. It’s as simple as that.
The program in Pennsylvania is, I believe, the most generous in the country. Medicaid disability in the Keystone State covers 100% of in-network out-of-pocket expenses for congenital heart defects, regardless of income.
While applying for Medicaid, the case workers at the hospital will advise you to also apply for Social Security disability coverage (SSI). Ignore them. Although your baby will count as disabled according to the Social Security Administration, unless you’re flat broke (which you very well might be, given time) SSA won’t give you a nickel. Stick with Medicaid.
For all of its miraculous merits, completing the PA Medicaid application process was a bona fide bureaucratic nightmare — exacerbated in large part because no actual human beings work at the Pennsylvania Department of Human Services.
Correction. No one works at the county DHS. One person works at DHS in Harrisburg. I eventually did speak with her.
So. If you happen to be a Pennsylvania resident, here’s how this shit show is going to go down for you:
The hospital will send you home with a disability form documenting your child’s heart defect.
After two days, you’ll finally get ahold of a human at DHS. This human says not only is the hospital form the wrong form, they’ve never seen that form. Plus it’s handwritten and illegible. DHS will send you their form.
The hospital will say that they’ve never seen that form, and they’re not quite sure what to make of it.
“Fill it out and send it to DHS,” you’ll reply.
They’ll get back to you.
At some point while playing string-and-a-can, you’ll say to both parties, “Why am I the one who is relaying messages back and forth to you?”
At some point this holocaust of waste, fraud, and abuse will end. Your child has secondary coverage.
Then you’ll get a notice that your deductible hasn’t been paid by the secondary insurer and the hospital has sent you to a collection agency.
When you call the secondary insurer and ask them why the hell they haven’t paid the deductible, because that’s their main job as the secondary insurer, they’ll reply that the bill in question’s date of service was Sept. 6.
“So?” you reply. That’s the date your child was born.
Disability coverage started on Sept. 10, they reply.
“How could the date of disability start after he was born?” you’ll probably bellow into the telephone. “He was born with the *%#+¥ disability.”
I’m sorry, sir, your tormentor replies. That’s the information we were given by DHS.
Oh. My. GOD. [Insert torrent of filth and profanity]
Anyway. I could go on. In fact, I could enumerate a handful of similar facepalm anecdotes, but you get the point.
Being an amateur orderly
At the hospital you go through a primer on some of the grunt work involved in pediatric nursing assistance: CPR, NG-tube placement and retrieval, and administering oral medication, among other stimulating chores.
Jack came home from the hospital on three medications and two supplements. He’s currently on two medications, given twice a day, and two supplements, given once a day. He also gets a monthly shot of Synagis, an antibody to protect him from a lower respiratory virus called RSV. Although most babies encounter RSV without complications, the virus can be fatal for a heart baby.
By itself, administering the Munch’s Rx regime isn’t the worst thing in the world, and neither Mom nor me thinks we deserve some parenting award for it. Frankly, coordinating his refills between the various doctors’ offices and the CVS near where we live is a bigger pain in the ass.
So why mention it? Because it adds moving parts to a regimen that’s already stocked up in that area.
Being a Case Manager
Speaking of moving parts, how would you enjoy the logistical challenge of coordinating multiple hospital visits and doctor’s visits and sessions with occupational therapists and physical therapists and developmental specialists and pediatricians and cardiologists?
All while trying to maintain the consistent daily routine every baby needs in order to thrive and grow?
You would? Super. You hit the jackpot.
I’ve meditated on the price of uncertainty in a previous post. Suffice it to say that if you’re someone who needs a high level of predictability, order, control, this job is not for you. It will eat you alive.
Even if you’re okay with a normal amount of uncertainty, the strain of permanent irresolution in the case of your heart baby is daunting to say the least. Many heart parents have to get mental health intervention for PTSD. I am not making that up.
Learn how to turn off your monkey mind, or else.
It can be easy to forget that your heart baby isn’t some alien life form residing on Planet Earth, that he isn’t some black swan, of an entirely different phenotype from a normal baby.
Actually, it’s complicated. It’s not that your heart baby isn’t a black swan, exactly, it’s that he’s also just a baby.
The hospital sends you home with a list of things to watch out for. Seems useful, until you realize they’re all things that normal babies occasionally exhibit, and most of them are fairly subjective.
This can have the effect of putting you into a constant state of hyper-alertness.
For example: Baby seems less active today, more tired. Was it that vibrant, stimulating walk we took, or the beginning of congestive heart failure.
Parent 1: Do his lips look blue to you?
Parent 2: [Peering] Hmm. Nah. They look pinkish to me.
Parent 1: They look blue to me.
Parent 2: Maybe a light fuchsia.
Parent 1: I’m worried.
Parent 2: Periwinkle, maybe.
Parent 1: Will you shut up?
Parent 2: I was just answering your question.
Parent 1: I’m scared.
Parent 2: All right. Let’s call the doctor.
In our heart babies Facebook page, exchanges like the following are far from uncommon:
New Mom: My baby has some bumps on her chest. They weren’t there before her nap. I’m concerned. Has this occurred with any of your LO’s?
Veteran Mom: Can u upload pic?
[New Mom posts photo]
Veteran Mom: That’s a rash.
New Mom: She’s had rashes before. It doesn’t look like her other rashes.
Veteran Mom: Call the doctor.
All of these interactions will end up with “call the doctor,” because a doctor is the only one qualified to separate fact from fiction.
Get comfortable with your doctors, because you’ll be spending a lot of time in doctor’s offices. Speaking of …
Doctor’s offices are awful
The only thing worse than going to the doctor yourself is taking children to the doctor. The only thing worse than taking children to the doctor is (to tease an upcoming post) taking them with their preschooler siblings.
Believe me, we derive no pleasure from asking you to boil your hands when you come by for a visit during cold and flu season.
Likewise, we don’t enjoy badgering guests about whether they’ve had their flu shots or had their Tdap updated.
And it gets old fending off the Woog from smearing his snot-covered hands all over Jack’s head or trying to give him yet another kiss.
We do it because the flu, which is apparently turbo-charged this year, can kill heart babies. Hell, it’s killed normal babies. At the very least, if your heart baby catches the flu, you’re headed for the hospital. And as we well know:
Hospitals are terrible miracle factories
Maybe some pediatric hospitals have valet parking and five-star dining. I wouldn’t know.
I do know that visiting Children’s Hospital of Philadelphia is like getting in and out of a storage trunk a hundred times in a row, handcuffed and with someone sitting on the lid.
Not to mention, the coffee is weak and the food makes the fare served by your high school cafeteria seem like brunch at Tavern on the Green.
Those are minor gripes, however, compared with the existential despondency a visit to CHOP provokes.
Aside from the sterile environs and the obvious whiff of morbidity that afflict all hospitals, pediatric hospitals inspire a particular type of gloom.
These are children, after all, plagued with the most diabolical and deadly illnesses known to humankind.
You pass them in the hallways, riding in wheelchairs. You ride with them in elevators, hooked up to god-knows-what. You sit with them and their bombed out-looking parents in the tedious light of waiting rooms.
Granted, it is possible to focus on the miracles that occur in these places, the cutting edge of medical technology that gives hope to these otherwise hopeless little lives. You could meditate on that instead of the depressing stuff.
Sometimes I’m there. CHOP’s slogan is “Hope lives here,” and it’s no bullshit. They do the impossible. They salvage the unsalvageable.
One night after the Munch’s second surgery, I had a long conversation in the CICU with Dr. Blinder, the attending physician that evening.
I told Dr. Blinder that I’d realized something just after Jack was born. “Something that I think helps me a little,” I said.
“Really,” he said. “What is that?”
I told him I’d realized that if Jack had been born when his old man was born, he’d be dead already.
Dr. Blinder nodded. “That’s true.”
“And of course the remarkable thing,” I added, “is that his old man is really young.”
Dr. Blinder smiled.
This is what passes for gratitude in my world. Or perhaps it is gratitude. Regardless, it’s a better than bad place to be. Trick is staying there.
So, one favor. If you figure that out, let me know how you do it. I’d be the luckiest guy in the world.