OK, I have been avoiding this post for awhile, now. Mostly because I don't even know where to begin, and partly because I am in no way an expert on this topic. I can't even say I'm well-read on it! All I know is Mallorie.
I have worked as a nurse with families with children with "special needs" for years. One thing I have learned, since having Mallorie, is that I knew absolutely nothing about their experiences. Before Mallorie, I always felt that I listened well, and that I could eventually "get" some of their experiences because of really listening and wanting to understand. Since Mallorie, I've learned how deluded I was in believing that I could possibly have "gotten" their lives. I can/could only relate to someone else to the extent that I have experienced something which intersects with their experiences. Beyond those intersections, I am only guessing.
Before Mallorie, I had had the experience of feeling frustrated with a pediatrician where I felt I was not being heard, or there was some sort of conflict that I didn't know how to resolve. But SINCE Mallorie, I have been thrown 100% into the sharing of the life experience of mothering a child with "special needs." What I have learned, and what I could not possibly have understood before having her, was that life isn't just about not being heard or understood. When you are the parent/advocate for such a child, just about every other situation involving getting care for her ... medical care, special therapies, equipment, ... heck, even advice ... can involve "the fight."
The Fight began before Mallorie was born. It began the day we had an ultrasound that revealed that her arms were measuring shorter than they "should have been." And that she probably had hand deformities. A meningocele. And the perinatologist mumbled that he "couldn't visualize her entire brain."
(**By the way. She has an entire brain. She has a very FINE brain, actually. Just in case that particular doc ever finds me and asks me again. Maybe "fine" is in the eyes of the beholder, and maybe not. But the point here was that the words which should have been underlined in that report were "couldn't visualize." But I remember the point where I had part of that report read to me later, and had to make that statement, that I had heard him mumble the phrase, and took it to mean, well, ... couldn't visualize ... I think it was the corpus callosum. Never that she was missing it.)
Anyway, The Fight began that day. And the questions. If I ran into pregnancy problems, what was the plan? Did we want to do non-stress tests to watch for early signs of fetal problems? Did we want to do a c-section because of the meningocele? What was our birth plan? Would we want a c-section if there were signs of fetal distress in labor? Did we even want to monitor the baby through labor? Did we want oxygen if the baby needed it at birth? Did we want resuscitation? Did we want NICU care?
Because of the particular medical professionals we were blessed to have involved (not counting the perinatologist), The Fight ... at least during the pregnancy/delivery and time immediately after birth ... didn't necessarily have to do with anyone saying they wouldn't agree to a particular request we might have made. But it had to do with defending against a deep-seated belief in the written word about Trisomy 13 and Trisomy 18, which existed in the minds of those amazing medical professionals. Most of what is written about these disorders can be boiled down to this: the likelihood is that if you are expecting a baby with one of these disorders, you should be prepared to lose her/him very early. Best to be prepared, and make your decisions accordingly. And plan on all the things that you will NOT ask to have done.
After her birth, however, The Fight meant that over and over, life-giving procedures that would have been offered to a "typical" baby with the same conditions, were discussed/debated, instead of being offered. It meant that we were questioned over and over if we were certain that we wanted X done. Did we fully understand that if the opening on her back (which had opened during delivery) were surgically closed, we would probably end up with a baby later needing a shunt? That we'd have to monitor her for the rest of her life for signs of needing a shunt? "So? If you don't close her back, she will die." Well, that's why we need genetic testing. To help make these kinds of decisions. In another conversation: to help the surgeons decide what they will be willing to do.
We were helpless in those days, in the face of all those "experts" who managed the gateway to whatever treatments and surgeries she required. We weren't very eloquent. Our appeals on her behalf were fraught with emotion, and really, emotion was all we had, besides exhaustion. Emotion sounds like foolishness in a family "planning" meeting in a room full of geneticists, genomists, a social worker, a nurse, and one very nasty attending neonatologist. We were threatened, actually; told that genetic testing would be done by the time she was discharged. Because if we did not agree to it, then the attending would go before the ethics committee and get permission to do the testing, anyway. A few moments later, after I realized just what he had said, and told him it was just wrong and then left the room, the same doctor told my husband that he didn't actually need our permission or knowledge to do the testing.
We were utterly helpless through our words to gain anything at all for Mallorie in those NICU days, and in those moments I truly believe that God spoke on her behalf. We certainly were not heard.
And we've had many other situations since those days, where we've had to fight for something that shouldn't have been such a hard fight. But these days, we feel we're fighting much less often. She's here, she's past the first year mark, and it's sort of like she has made her own case for her right to receive care. But I still have concerns for other babies and parents who still are going to face these sorts of obstacles in the earliest days, when things are so critical. And I shudder today to think back to those early days with Mallorie and think: "What if?"
What if the NICU attending who was so very negative and not wanting to do anything without genetic testing first, did not decide, "You know what? Let's try caffeine to see if it helps her apnea. It probably won't work, because the babies we know it works on are premies. And Mallorie wasn't premature." What if, when the caffeine trial didn't work, once she reached the target blood level range, they stopped the drug and said, OK, it was a failed trial, as we expected? What if they hadn't said, "Let's just try going up a little on the dose, because some babies do respond to higher levels?" What if she hadn't been hospitalized in that NICU long enough for apnea to return again ... serious apnea and bradycardia (low heart rate that can accompany low oxygen levels) .... and someone one day hadn't decided to check the caffeine blood level and learned it was LOW? And so we would have missed the chance to learn what happened when they gave her a bolus (extra) dose of caffeine and increased her ongoing doses? (The apnea disappeared, again.)
What if the neurosurgeon hadn't finally been willing to do the surgery to close her back (after 2 days of debating)? What if he insisted on genetic testing first? And what if genetic testing proved she had one of those conditions they call "lethal" and "incompatible with life?"
What if God hadn't already placed our amazing pediatrician into our lives? What if we had someone uncomfortable about attending Mallorie's birth? Uncomfortable with praying over her? Uncomfortable with providing her anything beyond "comfort care?" What if she hadn't taken the time to watch our decisions evolve those last 20 wks or so of the pregnancy, from "no tube-no vent" to the final version of our birth plan? What if she hadn't listened?
OK. I lied. This post is not about apnea. It's about The Fight. The exhausting and ongoing Fight.
And about the need for an openness to the possibility of something happening which is outside the statistics. It's about the Joshuas and the Tristans and the Annabels and the Jacobs and the Cohens and the Stellans of the world. It's about daring to hope. It's about hoping against no-hope. It's about saying people do not always obey the predictions or the statistics. And even IF they do, 5% is NOT 0%.
Maybe the next post will be about apnea.
This Try-somy Girl
3 days ago