i was so impressed with and grateful for the doctor who worked with me during my pregnancy with menucha.
of my four children, she was actually the first i delivered with him; i had been unhappy with the group that managed my first three pregnancies, for a host of reasons, but mostly because the rotating cast of physicians i saw never seemed to know who i was or anything about me.
i'd hoped things would be different this time. i wanted to feel like i trusted my doctor, like my doctor knew and cared about me, like we would be partners in bringing this new life into the world. and in the chaotic months leading up to my delivery, i felt like we'd accomplished that. the world was spinning on its head, but my pregnancy had hummed along smoothly. my doctor had always been willing to listen to my questions and concerns and flexible enough to create a care plan that felt like it made sense for me, even if it wasn't textbook.
so i think a part of me knew he was telling me the truth when he looked at the ultrasound image that terrible night and said, almost immediately, "i can see no reason why this baby has died, only that she has. and i'm afraid that's usually the way with these things."
at the time, i was too shocked and numb to really understand what he was saying. but as the days and weeks went by, it began to sink in that what he meant was: we don't know the reason now, and we probably never will.
that seemed unfathomable to me. in this age of modern medicine, with all the preventative care and screenings and studies and data that pregnant women are subject to, how could we not know the reason for my daughter's death?
i was aware that medicine doesn't have all the answers, always, in life. i knew that there were tumors that couldn't be shrunk, cancers that couldn't be cured. at least not yet. but i had never heard of death that couldn't be explained. didn't we always know, at least, the how? maybe i couldn't have saved my daughter. but was i really expected to live the rest of my life not even knowing what killed her?
"what does it matter?" people asked me. "it won't bring her back. do you really think it will make you feel better to know what happened?"
yes! i wanted to shout. i want to know what went wrong! i want to know why i was denied an entire lifetime with this child! i want to know how i can make sure i never lose another baby this way!
but the only ones who seemed to understand were other mothers who'd lost babies.
i joined facebook groups and support groups for parents whose babies had died in their third trimester. and i googled. a lot. every week, i emailed my very kind, very patient doctor five new questions, five new theories of how it could have happened: too much diet blueberry tea? had i lifted something the wrong way? maybe i'd slept on my back and not realized it. had i walked too far? could it have been listeria from bagged salad?
every week, he shot me down. no, no, no.
on my support groups i learned of all kinds of terrible third-trimester complications i'd never had to think about during my mostly normal, humdrum pregnancies. some women had experienced too little amniotic fluid; some too much. there were true knots, multiple knots, so many umbilical cord knots. there were placental abruptions. there were rare blood clotting disorders. placental insufficiencies. rare infections.
every time i learned of a new scenario, a new case, i called my doctor. as if he wouldn't have recognized it. as if he wouldn't have told me. as if it was really going to be me, the patient, that cracked this mystery. "but dr. w, maybe it was this. did the pathologist look for this?"
the answer was always the same. "sadly, that does happen, and when it happens, we can see it. we didn't see it with your delivery. your placenta was fine. the fluid levels were fine. there were no blood clots. there were no knots. you didn't have an infection. maybe stop googling stuff."
every time, i was stunned. it must have been something, i thought. the answer exists. if it exists, i have to be able to find it.
so when i learned of a placental pathologist whose expertise was determining the cause of death in stillbirths, i was filled with hope and anticipation. this, i convinced myself, was what i'd so far missed. other mothers in my support groups raved about him. "he can figure out the cause of death in 90 percent of unexplained stillbirths!" they wrote.
"but isn't it too late for me?" i messaged back. "my baby died 6 months ago. she's long buried."
"the hospital keeps slides of your placenta," they insisted. "all stillbirth placentas for 10 years or something are kept on file for research. ask them! they'll tell you! maybe you'll finally get your answer! i got mine!"
so i emailed the pathologist's info to my doctor and asked him what he thought.
"i mean, he sounds legit," he said, a little skeptically. "do i think he is going to have any real, meaningful insights into what happened? i'd be very surprised. but if you want me to send him the slides, there's no harm in it. just don't get your hopes up."
so we sent the slides. and we waited for the pathologist's report.
and finally, on a frigid day in february nearly eight months after that horrible day in june, i heard the words i'd imagined hearing for so long: "i can tell you what happened."
my heart pounded. my hands were cold. this is it, i thought. this is the moment of truth. the moment where it's all going to make sense. finally, i will know the reason for this suffering.
in a private zoom meeting (isn't that how we do everything these days?), the pathologist explained to me the findings of the three-page report he'd emailed me, so dense with medical terminology it had been complete nonsense to me. he said, "it's extremely rare, but pretty simple, actually. she bled to death."
"she...what?" i said.
i don't know what i had been expecting to hear, but that wasn't it.
the pathologist shrugged, and pulled up a diagram on his screen to share with me. it was called maternal-fetal hemorrhage, he explained, using a complicated analogy that still made zero sense to me - something about hands in a bucket of water? he held up his water bottle. "newborns only have this much blood in them to begin with," he said. "it really doesn't take much blood loss to cause irreversible damage."
"so there was a problem with the placenta?" i said, trying to understand.
"no," he said. "the placenta was fine."
"oh, it was Rh factor," i said. "i didn't get rhogam in time." that made sense to me. as someone whose blood type is A negative, i'd always had to be very careful about getting certain shots at certain points in pregnancy, to prevent my immune system from attacking a baby whose blood possessed antigens that mine didn't.
"no," he said. "you were up to date on the rhogam. the baby was fine. there are a few different causes of maternal fetal hemorrhage, but this one was unexplained."
my heart dropped. i stared at him. "what do you mean...unexplained?"
he sighed. "i mean, there is no identifiable cause for why it happened. just that it happened. you wanted to know what happened. that's what happened."
i could feel the tears running down my cheeks. "but..." i said. "but you don't know why it happened? to her?"
"it's what we call a chance event," he said. "some people get hit by asteroids. some babies die of maternal fetal hemorrhages. sometimes there's a reason for it. sometimes there isn't."
"but why her?" i said. "was she always going to die? from conception, was she always a baby i was never going to bring home? what changed? why would she just suddenly bleed to death two weeks before her due date? did i bend over wrong? did something hit me?"
"no," he said patiently. "you couldn't have caused this to happen if you were trying to. it was random. it just happened."
"could i have saved her?" i insisted. "if i was in the hospital when it happened, and the doctor knew it was happening, could he have saved her?"
"the doctor would never have known," the pathologist said. "no one would have known. it's a silent event. it doesn't show up on ultrasounds. it doesn't show up on non-stress tests. you would have been sent home, and she would have died there."
"but then..." i struggled. "how can i prevent it from happening again? how will i know if it's happening to another baby?"
"you can't," he said. "you won't. but i would be shocked if it happened to you again. the statistics of it are astronomical."
"weren't they astronomical in the first place?" i said.
he shrugged. "just trust me on this," he said. "it's super rare."
i ended the zoom and sat on my bed, my head in my hands.
this is what you wanted! i raged to myself. you wanted answers! you got answers! you wanted to know how she died. now you know. she bled to death. it wasn't a cord accident. it wasn't an infection. what were you expecting? a signed explanation from God? "here is what you did that made your baby die. here is why you didn't get to keep her. here is what you do to save the next one."
yes! i thought, sobbing. yes! this isn't what i wanted. this isn't an answer. it's just more questions. why should a healthy baby suddenly bleed out? if the odds were so low, why did it happen to us? how can it be that they can know this is why she died but not how to prevent it from happening again to another baby?
i called my ob, a total mess, and asked him if he had had a chance to read the pathologist's report. i told him about our zoom conversation. "he told me the how, but not the why," i said angrily. "what good is that? what's the point?"
"that's all pathologists can do," he said. "i've been doing this for a long time. and cases like yours are extremely rare. but no matter how much investigation we do, there are some questions that we just do not get answers for. the 'whys' of something like this, that's one of those questions. we can spin our wheels for the rest of our lives. we will never know."
"but how am i going to spend forever not knowing?" i cried. "how can i never know what happened to my little girl? how will i ever be able to have another child, knowing that it could die at any moment and i wouldn't be able to save it, because i wouldn't even know what was happening?"
"you just do one day at a time," the doctor said. "it's scary, and it's hard. no one has it figured out. if there was a book about how to do it, i would own it, and we would talk. but there isn't. so you just play it by ear, and you take it one day at a time."
so here i am.
there's nothing left to google.
i've run out of reddit rabbit holes and google tunnels. i've run out of what ifs.
why did my daughter die?
why, weeks away from beginning her life with our family, was she taken from us?
what could have saved her?
why her? why us?
these are questions i must learn to live with. i must make my peace with them. i must grow old and die with them. i must accept that there are things, important things, things that don't feel fair or right or possible, that i will never understand.
like so many, many people this year, i am living with questions.
and it is hard.
Comments