Last night, the ED was filled with what I’ll start calling “perspective cases.” It’s a case (patient) whose situation or disease helps me to see things from another perspective. Here’s how it went…
Have you ever heard of or seen a Papoose board? It’s basically a straight jacket for kids. It’s used in the ED when you need to keep a kid still while performing a facial procedure requiring stillness. To say the least, it’s pretty terrifying and can be traumatizing. I saw two kids being strapped in so we could stitch up their lacerated chins. But really, imagine being strapped up, onto a bed, with a huge surgical light shining on you, a stranger holding your face still (tight and painful), the clanging of metal tools, and the inevitable element of suspense… anyway, these poor kids and their parents. I’m just happy I wasn’t the one strapped down.
Then came in this lovely 3-person family. Their 4-year old daughter has Rett’s syndrome. It’s a rare, usually sporadic, genetic mutation occurring almost exclusively in girls that leads to lots of clinical manifestations, including mutism, short stature, and epilepsy. These two young parents were given this baby whom they devote their lives to helping her live comfortably and ultimately survive. They treat her epilepsy with medical marijuana, her neuropathic pain with cold ice packs, and are now dealing with a new stomach ulcer found. The poor mute girl has acid reflux over 37 times within 24 hrs. The 3 were on their way down to San Diego when she cried in pain uncontrollably on the train, forcing them to get off in LA and seek help. I was amazed by the commitment and dedication these parents have for their daughter. It can’t be easy parenting such a child.
Have you ever fallen through the cracks when you most needed help? Have you ever tried to get help but couldn’t because your body was too weak? Well, let me tell you about a girl. Ulcerative colitis… aka UC. It’s a terrible disease and it’s chronic. The colon becomes inflamed and the result is pain and bloody diarrhea. But that’s not all. The disease can affect your joints, eyes, and skin. It can eventually lead to colon cancer. A UC patient must must must be under observation by a gastroenterologist and be compliant with medication… otherwise, they can have a flare up. A 21-yr old came in with a flare-up because she’d stopped taking her medications a month ago due to changes in her insurance and therefore GI doctor. She couldn’t get her prescription filled because she had no one to fill it. She’d gone to another hospital ED who didn’t have a GI doctor on shift. She went to another hospital where the line was too long and she thought she could wait 2 weeks till her future appointment. But the pain got so bad and she was so weak that she decided to come to the children’s hospital, where she’d been treated previously. She just needed her meds. She’d fallen through the cracks. And now she’s 21, so we couldn’t treat her… at the children’s hospital. We had to tell her that we couldn’t help her… because of her age. It was heartbreaking.
Last perspective case of the night: gastroschisis. Again, another rare structural deformity that occurs in-utero. It’s a developmental defect resulting in exposed (uncovered) fetal intestines. The intestines are exposed to amniotic fluid throughout the baby’s time in mom’s belly. I’m not sure about the regulations of abortions in the US, but in Israel, once the diagnosis has been made, mom can decide whether or not she wants to abort the pregnancy. Why? Well, once the baby is born, it will most likely have to undergo bowel resection due to necrosis caused by long-term intestinal exposure to amniotic fluid. This results in “short bowel syndrome.” The baby will require special feeding through a tube directly connected to their stomach. They will likely suffer from malnutrition due to lack of normal absorption of normal foods. This is a chronic condition that both the kid and the parents live with. The child might end up needing more GI surgeries, with an ileostomy (poop bag), might suffer from easy fractures due to osteopenia, and will likely live a very different kind of life than that of a “normal” healthy child. It’s a big and important decision for a mom to make when given the diagnosis. Okay so here I am, looking at this 8-year old sassy and sharp kid. I’m not sure what kind of life he lives outside the hospital, but he knows what a PICC line is and that’s sad to me. He was casted in the ED a couple weeks ago for a fracture. We did another x-ray on this other arm, which he was complaining about, to rule out another fracture. He’s constantly carrying a small backpack, which holds his G-Tube (gastrostomy tube). He has a poop bag sticking out of his stomach. If he was able to choose whether to be alive or to live the way that he does… if he could whisper in his mom’s ears 8 years ago, would he tell her to abort?