On Being Early
Today is World Prematurity Awareness Day, and November is Prematurity Awareness Month - an important time to raise awareness for the maternal and infant health crisis of preterm birth. Prematurity isn’t something that goes away when you finally pass the much anticipated “carseat test”, sign your discharge papers and leave the NICU. In the best case scenario, it is something that your child will gradually shed and evolve from, something your family will have distant, muddled memories of, memories that will seem almost like they belong to someone else when you look at how far your child has come. Maybe a few surprise medical bills that will keep haunting you here and there. In the worst case scenarios, it means difficult choices and families pushed off course into deeply painful outcomes. In most cases, regardless of outcome, it means having to navigate a terrifying new world with its own foreign language and laws, and finding yourself navigating it very much alone.
This is where you might be scrolling past, thinking, Well, that’s probably material better suited for a mommy blog. Because isn’t it all to do with having a baby, or transitioning into parenting, anyway? Isn’t that just something birthing parents do, and yeah, sometimes unexpected shit happens? Aren’t we all here for posts about the power of networking, helping each other through waves of layoffs and tech industry doomsdays, promoting our latest marketing campaigns or maintaining our weekly dose of “Congrats on your new role!” comments, "10 years ago I had $14 in my bank account" success posts and occasionally finding out what the rest of the team who worked with you on that thing is now up to? Isn’t this one of those, errr, parenting things? More likely than not, unless you’ve ever had to swipe your “Parent/Visitor” badge into a NICU checkpoint, you probably assume that dealing with the fallout of prematurity is just one of those things that have nothing to do with #worklife.
I’m putting this here on LinkedIn and not on some mom-centric Facebook group or parenting subreddit precisely because like almost everything else tying into the delicate balance of health and family, it has EVERYTHING to do with policy, including the ones companies as well as we as leaders, managers and colleagues help shape and bring to life. It’s those policies and benefits - or their glaring absence - that can make or break how a family emerges from an often traumatizing ordeal like a NICU stay. It’s the difference between knowing you have the days (or not) to be there, physically present, to advocate for your preemie. To be there during “cares” every three hours, when the doctors make their rounds and exchange information with the team caring for your baby. It’s knowing you have the time to meet with your social worker or other case workers from the hospital. To attend the classes and trainings on essential preemie care. To meet with the occupational therapist to discuss the plan of care for your preemie, to check in on their progress. To get questions on their latest bloodwork panel answered, instead of driving yourself mad with Google searches. To use the hospital-grade pump every three hours so that you can provide the only thing you can probably give your kid right now, in this incredibly messed up situation - nutrition. To be able to attend the parents support group meeting held every week at the hospital, instead of just fall apart on your own. To - in the few remaining hours you will have, assuming you are fortunate enough to live close to the hospital - get home, take a shower, put on a fresh change of clothes and perhaps eat something that isn’t sad hospital cafeteria food while trying to get through phone-calls with your insurance benefits manager. And… That’s in the best case scenario, where you are “American-privileged”, and you have insurance. Hopefully, the good kind.
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Unlike most of the world, not much in the U.S. is mandated or protected when it comes to the business of giving birth. Having moved to the States as an adult, from a country with universal health care and government-protected leave, I have had plenty of time to get over my initial shock and disbelief over the bare minimum of the 6 to 8 weeks of disability leave offered to new birthing parents, if at all. For context - at 6 weeks on, after an emergency C-section, I was still limping along from the 6 train over to NYU Langone to be able to see my son, who was still hospitalized. I was obsessing over every ML he was able to take down without a tube feeding, and every gram gained. I was consumed by the numbers displayed on the various screens around him showing me how well (or not) he was breathing, how regular (or not) his heart rate was, trying to maintain the last shreds of my sanity while subjected to the incessant beeping of the monitors and machines keeping him alive. I was not thinking about anything else.?There was no space for anything else.
And I was extremely fortunate to be able to have that time, for his sake and for my own. Doctors will tell you that when a baby is born prematurely, an essential part of their care is touch. Plain and simple as that - it’s the having of someone there, the warmth, the human interaction. In our little corner of the NICU, I was often sitting alone with my son, or with just another mom or dad there. You would get to know the "regulars", their hours, as well as notice the incubators that never had anyone around. Several in the cluster of incubators in our section remained mostly lonely throughout the day, orphaned of parents or really anyone, other than of course the PAs and nurses who would regularly do the care rounds. Change diapers, swaddle, bottle feed. Cuddle, sometimes sing. Occasionally, a lady armed with a ukulele would stop by our wing, to gently strum and sing Beatles songs to the helpless neonates. I know that every other parent of those babies also wanted to be there, but many simply couldn’t, because there weren’t any policies or protections in place to allow them to be there. To let a new mother be there without using up all of her very short paid leave time before her baby even gets discharged to go home. To let a new dad be part of their preemie’s care without potentially losing his job and the subsidized health insurance that comes with it. To be there. To be parents in an incredibly delicate situation that throws you into zero gravity, untethered. To be present to advocate for their child and worry about nothing else but what should matter in that moment.
Again, I was incredibly lucky to have that time. What the rest of us can keep in mind on days like World Prematurity Day is that it’s up to us to influence and change the policies and protections available to others. And while like every parent who’s been a member of the NICU club I will tell you it’s not a club you want to find yourself in, I want you to know that those of us who’ve been there will fight and do whatever possible to make sure others who find themselves in this club will have an easier time than we did.