Plinth Blog Special Needs Parenting

3May/170

I Remember the NICU Well, Jimmy

Jimmy Kimmel presented a monologue recently about the birth of his son, Billy. Here it is from YouTube:

There are a number of things that struck me about his monologue and they're all pretty awesome. First, his description of being taken through the process from suspicion of an issue to full on NICU work because of a detected heart defect is spot on. It's a real "deer in the headlights" moment when the sorting hat of fate decides that you're going into NICU House. Second, I love how he has the wherewithal to thank so many people off the top of his head and just to make sure, he also pulls out a list. Third, I like that he showed the picture of his son all hooked up to wires and tubes and machines to present the reality of it. Fourth, he didn't hide his son's diagnosis. Fifth, and most importantly he presented his experience as a teaching moment for the importance of insurance and access to good healthcare, and he did so in a way that was hardly partisan and more of an appeal to reason. The final sum is terse but effective: "If your baby is going to die and it doesn't have to, it shouldn't matter how much money you make."

Earlier in the day, I tweeted that he now had something in common with about half the parents of kids with Down syndrome. This is because the incidence of heart defects in the Down syndrome population is around 50% and other issues certainly will drive that higher. 14 years ago, when my daughter was born, a blood clot broke free from the placenta, when into her heart, through the atrial septal defect (ASD) in her heart, right up the carotid artery and into her brain, broke apart and lodged in the frontal and parietal lobes and the pons. In other words, my daughter had a stroke that has colored her life since then. And that wasn't all. She had pneumonia, a suspected infection, oh yeah - and Down syndrome. This was a huge amount to take in as a new parent. There are so many decisions to make and for the most part you have to trust what you're told by the doctors and nurses.

Here she is hooked up to oxygen and heart monitors and an oxygen saturation meter. Zoom into the picture. You can can see that someone when to the trouble of making the sticky pads for the heart monitor "kiddie". There's one shaped like a ducky and one has a frog, another a whale. It's not necessary, but in the moments of worry, it was oddly comforting to see the design whimsy.

When I took pictures in the NICU, I tried to make them honest. It really wasn't pleasant and I know that even though Alice spent 3 weeks in the NICU, we had it far easier than many of the other parents and babies. Alice didn't need surgery, she was good-sized, she was thriving.

They put in an IV in her foot. They moved it to other spots during her stay. Don't ask me how they managed to find the tiny little veins through the baby chub.

This is me in one of my earliest parenting experiences. E had just fed Alice and I held Alice while E covered up. This is a piece that Jimmy didn't mention. Every time you enter the NICU to see your child, you have to spend a minute scrubbing. They have a sink with a timer. You soap up and wash until the timer says it's OK then you have to wear a gown and a mask. I understand the need of doing that, but it's still an in-built deterrent to seeing your child. That and unhooking the wires and hoses.

This is a picture of Alice after she came home. You can see that we weren't free of hospital apparatus. Alice needed oxygen and a little cannula. We had a big tank upstairs that had a bubbler unit to run the oxygen through sterile water to keep it from drying out her nose. We got enough tubing so that she could sleep upstairs or downstairs. Pro-tip: don't tape the tubes to your baby's face. Instead, put down a patch of tape on her skin then tape the tube to that. The patch on the skin will stay on much longer whereas the patch holding the tube comes off frequently. Taping to tape reduces skin rawness from tape being constantly pulled off skin. The hospital wanted to send us home with an oximeter. From what I saw in the NICU, the oximeter was a machine built strictly to generate false positives. I saw them going off all the time in the NICU and never once did I see it happen for true positive issue that needed attention. You want me to babysit one of those? No thanks.

In the same way that Jimmy did, I want to thank Dr. Duda (pulmonologist), Dr. Gilmore (neurologist), and Dr. Steele (hemotologist), and Bonnie (nurse). All these people I remember, 14 years later and I'm terrible with names. Dr. Steele left his specialty shortly thereafter and became a general pediatrician and he now sees both our kids. At the time, both E and I were teachers and neither of us had enough sick time for this. I want to thank the Hatfield Teacher's Union for giving us time from their sick bank. When I finally quit teaching, on the way out I donated all my leftover sick and vacation time to the union rather than collect it. I felt I owed them that much.

As for insurance, like Jimmy, we were lucky that we had insurance through our jobs. Unfortunately, Blue Cross sent us a "sucker bill" every month for the following six months where they would bill us for some random procedure/equipment that was tied to Alice's birth. Our policy said that birth and all complications were covered at 100%. So every month I would call in, wait on hold and talk to a rep, get the charge voided and then get a confirmation number for the call because after the second one, I knew that I would need these to make the process of calling bullshit faster next time. And I consider us lucky to have to have had to only jump through that irritating hoop. And this is why the United States needs medical coverage for as many people as possible, if not everyone. Illness and injury are already traumatic; there is no reason to add more trauma about paying for care when it is not necessary. Especially for children.

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