Exiting the pediatric ward, entering the realm of radical uncertainty.
By Elizabeth Silver
After living for two weeks in the NICU at Children’s Hospital Los Angeles following my daughter’s stroke, my husband and I are discharged without much instruction.
“Go home and enjoy your daughter,” the doctors say. There’s nothing to do right now but wait and watch for hydrocephalus.
Hydrocephalus literally means “water on the brain” and is a build-up of fluid that puts pressure on the brain to swell, causing it to press against the skull. Hydrocephalus, or “hydro” for short, often follows a bleed like Abby’s and becomes something that doctors will monitor in Abby over the next few years. It can resolve on its own or resolve with surgical intervention.
“Time will tell,” is all I remember the doctor saying before walking out of the room with her team, and ushering us into home care.
We monitor Abby from home with head measurements to see if her head is growing, expanding like a beach ball filling with air ever so slightly. Every few weeks she’ll undergo a CT scan to measure the size of the brain ventricles and see if they are growing, potentially causing hydrocephalus. Every few months, we’ll get a better image of possible growth with an MRI. If the brain is expanding, then surgery is the next step, which would mean a placement of a shunt, a narrow tubing that could be surgically inserted in order to allow the excess fluid to drain. A dangerous procedure, as anything can be on the brain, which requires cutting into bone and tissue, and which can change physical and mental abilities with a slight twitch of the hand. Another possibility is an experimental surgery designed to release the pressure and return the head to normal measurements, and hopefully a normal life. Or perhaps nothing may happen and the blood will continue to reabsorb, there will be no hydrocephalus, and all will be well.
This stage is waiting to watch the grass grow, to see the ticks of the clock shift. It is the natural extension of a bleed, a cruel reminder that once you’re discharged from the hospital, it’s only partially over. Next comes the hydrocephalus scare, and after that, rehabilitation and observation. One neurosurgeon tells us it might be two years until we’re out of the woods, while another thinks there will be resolution “one way or another” within the year. Not the cliché that time will heal all wounds, because it may for some and may not for others, but rather the prescription of time as the only source of answers.
Yet there is a glimmer of hope at such a young age. When there is a bleed in the ventricles of the brain, blood has a place to swim, a watering hole where it can rest and drain without instantly causing permanent damage. Moreover, in infants the skull is not yet fused together, so when blood collects in the ventricles, expanding them, it has a pressure valve, causing a bulge out of the fontanelle. In an adult where there is no opening in the skull, the blood pushes down on the brain stem, potentially causing death.
Think of the spinal column as plumbing. Water from the top flows down to the rest of the pipes, but when the source is blocked, nothing can flow. When hair blocks a shower drain, water cannot exit the tub into the drainage pipes below, so it just continues filling the tub until it overflows. An adult brain is a tub with a hard lid on top. When the water overflows due to the blocked drain, there is nowhere for it to go. In an infant, though, the tub is covered with a handful of soft clay plates not yet hardened into cement. If the drain is clogged on an infant tub and the water cannot overflow, we can see the soft clay plates shifting and expanding to contain the water, buying time to unclog the drain.
Every hour I hear whispers.
Go back to your normal life. Enjoy your baby.
Does that mean I should enjoy her because I won’t have much time left? Or I should enjoy her as if this didn’t happen? As if it’s not going to happen again. Or get worse. Or until her full head of hair needs to be shaved to create a clean palate for a scalpel.
Before we leave the hospital, a physical therapist swings by our room and is the only one who provides us with a plan. A silly computer printout of stretches and exercises. The gift of phantom control. If we do these, the neurons in her brain may reconnect properly and this will be a bad memory alone. Physical therapy in the form of “early intervention” may be the best solution. One of a few ways to take control back and intervene.
I take the printouts. They are nothing more than regular infant exercises that we do anyway. Moving her legs in circles. Shifting them back and forth. Ensuring a specific amount of time that she’s placed on the belly so that the neck strengthens and the two sides of the body are forced to use muscles evenly. I don’t know how yoga moves and massages on a newborn can fix something this big.
Yet Abby is discharged without her team figuring out what happened, without knowing if seizures would recur, without knowing if she’d be put on a path to what medicine would deem normalcy. The range of options: slight physical delays that could be remedied in a year or two with physical therapy, no delays or impact whatsoever, or severe developmental deficits. A completely normal future or a re-envisioned normal. A or Z or anything in between.
But go home and enjoy your daughter.
I obsess over statistics I find online about brain bleeds. Some sites claim a 20 percent chance of mortality and 90 percent chance of severe neurological damage, without painting a specific picture. Will we be aiding our adult child in her daily routine or will this be her college application essay topic? This is our daughter, we say to each other. We love her and will be here for her regardless. But now, maybe we shouldn’t have a second child. We always wanted two, but perhaps not anymore. Abby may need all our help, all our attention. Or she may not. Maybe she’ll be a genius and none of this will matter. Maybe she’ll be like my brother—profoundly sick as an infant, in and out of hospitals for years with severe respiratory problems, and later a college athlete.
But forget the long-term neurological concerns: the focus is now on hydrocephalus and neurosurgery. How can I monitor for this at home? I don’t have the tools, the skills, the education. How will I know if that rolling eye jitter is normal, or if she is crying because of cerebrospinal fluid leaking into her brain tissue, blocking flow into the spinal column? Is she just acting like a baby and crying for hunger? Or is it just gas? Is that twitch in her hand just fussiness or is it another seizure? Was she pulling her own hair so ferociously before the bleed or is she simply figuring out how to grab? Is she exploring the way her tongue moves within her mouth, or are sensory issues starting to form?
From home, we must monitor for seizure activity. We must measure the size of her head and visit our pediatrician monthly for official head measurements. Abby must have a cranial ultrasound every other week so the doctors can evaluate the size of the ventricles and measure them against each other, to determine if they are expanding.
But if the head measurements increase, she may have hydrocephalus. She may need brain surgery. I’ll have to understand how a shunt works and follow the path of replacement every so many years, if necessary, learning where it drains, and all the risks that accompany neurosurgery on an infant.
First, though, let’s just wait and see.
Go home and enjoy your daughter.
But if she’s inconsolable, it could be hydrocephalus.
If she’s seizing, it could be hydrocephalus.
If there is fever and vomiting, it could be hydrocephalus.
If the soft spot in the head, the fontanelle, is bulging, it could be hydrocephalus.
Watch for it.
Wait for it.
Feel it from time to time to make sure it is still soft to the touch.
Go home and enjoy your daughter.
I go home and Google uncertainty is. The search reveals the following answers in the top three: (1) “Uncertainty is the essence of romance”; (2) “Uncertainty is killing me”; (3) “Uncertainty is the gateway to possibility.”
A positive choice. A negative choice. A hopeful one.
Elizabeth Silver C’01 is the author of The Execution of Noa P. Singleton, a novel, and The Tincture of Time: A Memoir of (Medical) Uncertainty. Excerpted from The Tincture of Time by Elizabeth L. Silver. April 2017 Penguin Press. Published with permission.