When we walked in our front door, I looked around at our apartment. I’ve always had a strange and confusing feeling when walking into a home I’ve been away from for a time. I remember a family vacation when I was no older than 9 (because we lived in “our old house” – i.e. 222 9th Street). We had just returned from a 3 week road trip, having stayed on Long Island with my mom’s family, then probably visiting the Friendly Farm, Boston, the whole east-coast nine yards. It had wrapped up with 2 days of 6-hour-at-a-time minivan driving across Pennsylvania, Ohio and Indiana.
I always got disappointed when we entered Indiana, because it meant we were almost home. It meant no more stops at middling (or worse) family restaurants or worn out Holiday Inns. It meant a return to our regular lives. It meant no more staring out the window for hours searching for license plates from all 50 states.
When we walked up the house, I remember the sound the deadbolt as my father unlocked the door. We had “double locked it” and since we had an old house, the door didn’t quite sit right in the frame. You had to pull the door up and in towards you to unlock the deadbolt. It was this creaking but hollow lock-turning sound. Then we couldn’t open the door because there was a pile of mail on the other side. All the lights were out. It felt empty and strange to be there.
When Brooke, Sam and I entered our apartment, there was a whiff of that. In fact, strange as it may seem, I felt a kind of disappointment when we left the NICU, left Mother/Baby, and left the hospital. As sad and frightening as it had all been, there was an intensity that I knew I was leaving behind, moving into the world of changing diapers, putting Sam to sleep, and other very ordinary tasks. I’m not saying I wanted to go through that again, but somehow I also didn’t want it to end.
It was warm because it was late afternoon and all the sunlight streams into our house then. It was one of those days of spring that’s hotter and more humid than you want it to be. As we entered the house and put all the stuff down, I was expecting a certain feeling. One of the cliches of new parenthood is that you’re told you’ll be afraid all the time. I was expecting to feel a sense of “oh my god now what do I do?” It’s a widely reported phenomenon.
I didn’t feel that, not even a little bit. This may be because I had already dealt with what looked like a near-death experience with Sam. I had seen the worst: I had looked it in the eye and it had looked right back. So now, here we were, at home, and none of that was happening now. I felt calm and relaxed.
One of the first things I remember is that Sam needed a diaper change. We got out the pad we had gotten in our diaper bag, took a picture and posted it to Facebook, and then changed his diaper. It was simple enough. Our church had organized to have us receive home-cooked food every other day for 2 weeks. It was, in its own way, perhaps as much of a blessing as Noelle’s doula work.
We set up the Pack-n-Play, with the bassinet inset, and Sam slept in it. He woke up every few hours at this point, to eat, and there were some rough nights, but though this was hard on Brooke, I don’t think it was that hard. Again, it could never be as hard as Sam not breathing.
The next morning, we brought Sam in for a follow-up appointment with our pediatrician. Well, not exactly “our pediatrician.” We had planned on using a pediatrician at Rush. We had a recommendation from a friend. But we had had to schedule a Saturday appointment to follow up on Sam’s bilirubin levels. When he came home from the hospital, he was a bit yellow, but they said it was fine to bring him home as long as we scheduled a follow-up for Saturday. We did so, but our doctor wasn’t available on that day. Instead, we were to see Dr. Wongsongpagoon. It took me 5 times asking to get the secretary to spell out her name.
“We just call her Dr. W.”
“Okay, well, I need to fill out a form for a hospital that says we have an appointment and what the doctor’s name is, so I need to know how to spell her name.”
“But it’s just Dr. W.”
“What is her name?”
That secretary is still annoying and unhelpful.
April 20, 2014 was bright and clear Saturday morning. We put the stroller together for the first time and walked Sam over to the Harold Washington Library pink line stop. We posted some pictures (leading to disbelief – “is that even SAFE?” from many quarters – nevermind that driving in a car at any time is orders of magnitude more dangerous than riding on an El train) and rode the pink line to the Illinois Medical District stop and walked to the blood testing lab that was open.
While there I saw one of the saddest things I have encountered through this whole process. There was a very overweight, poor African American woman with her 3-day-old at the lab. She was there probably for the same or similar reason we were: to make sure her baby’s blood didn’t reveal any problems.
When we came in, she was talking to the receptionist. The receptionist was (albeit politely) refusing her service on the grounds that some baroque combination of insurance benefits restrictions and hospital policies meant she couldn’t receive care. The woman was barely speaking, she was so intimidated by this process, and she hadn’t brought her ID, and she didn’t have her insurance card.
Your first reaction might be “why didn’t she have her ID? Why didn’t she have her insurance card?” This was partially my reaction.
But stop and think about what that reaction implies, and what our general lack of shock about this sequence of events also implies. Here was a human being with a 3-day-old human being who needed some kind of help, at the front desk of one of the largest, most expensive and likely most publicly subsidized medical complexes in the western world. In any civilized country there is simply no arguing what should happen next. The receptionist should perhaps take her name, perhaps make her wait a few minutes while services are readied.
But there is simply no defense for what was happening. Even if you think that the mother had somehow “brought this upon herself” (which is a ridiculous, selfish and horrific view for you to hold), even if you think that, how could you possibly make an argument that her 3-day-old doesn’t deserve whatever coverage is available to others? It still makes me angry.
On this day, this receptionist went the extra mile, making a few phone calls, fudging a few entries on a form, to get this woman and her child in for whatever it was they needed.
But there is simply no excusing that this happened at all. No excusing that intentional denial-of-service is an essential aspect of the American health care system, that hospitals employ whole teams of people to “aggressively” apply insurance rules and interpret good samaritan laws and their non-profit charters or religious exemptions to allow this to happen. No excusing that more than 40 MILLION people live in our country and are not allowed routine access to medical care. There is no other country in the world for which this is true. We usually say “no other industrialized nation” but I highly doubt there’s anywhere where 40 million people lack medical coverage and then other 280 million don’t. Or whatever the relevant numbers would be.
It’s sometimes hard to know what would count as final proof to any of us that the American health care system is completely and irredeemably broken. I could adduce facts and figures until my face turned blue (and would be glad to) but when it comes down to it, this simple moment conveys all that needs conveying. Here was a woman with her baby being told “there is no room at the inn.” And it wasn’t the evil Roman census takers, “the Pharisees” or the “Judeans” that were doing this, it was our country – you, me, the politicians, the insurance, hospital and drug companies, ALL OF US. Here was an underpaid secretary doing the dirty work for all of us who refuse to care for long enough to fix this problem once and for all.
After Sam got in to be tested (luckily our paperwork was in order and we had the money to carry private insurance), we went over to the pediatrician’s office a few blocks away. By the time we got there they had already received the test results. His bilirubin level was still too high (17 maybe? I don’t remember the number of exactly what was being measured, but 17 sounds familiar). Dr. W informed us that she’d have Sam admitted into the hospital for “phototherapy,” where he would lie under something that looks like a plant growth lamp or a tanning bed for a few hours, to get the levels down. She told us he’d be admitted for around 24 hours, but that this was a routine procedure that worked 95% of the time.