The first time I read my fertility clinic’s chart notes about me, I was on the floor of our bedroom. Laptop balanced on a shoebox, logged into the patient portal at 11:47 PM on a Tuesday. I had requested my records after our second failed transfer — not for any noble reason, just because I wanted to see if there was something they knew that I didn’t. What I found was a document that, if I’m being honest, read like a weather report about my own body. Written by someone who had observed it from a safe, clinical distance.
The notes were not wrong, exactly. Patient presents for transfer of single euploid embryo, day 5, graded 4AB. Lining 9.2mm. Patient and partner counseled on risks. Patient tearful but agreeable.
Tearful but agreeable. I want to sit with that phrase for a moment. I had been tearful because the embryologist had called ten minutes before the transfer to say she couldn’t confirm whether the embryo had fully hatched, and the word hatched had hit me in a way I wasn’t prepared for — something about the image of my wife’s genetic material struggling to break out of its own shell while I lay on a table with a full bladder waiting to receive it. And agreeable — I had agreed to proceed because the doctor had said, with the particular confidence of someone who does not have to live inside the outcome, that it was fine. But tearful but agreeable was the version that made it into the permanent record. Everything else — the hatch confusion, the full-bladder agony, the way my wife squeezed my hand so hard I thought she’d break a finger, the specific tone the doctor used that I can still hear three years later — none of that existed. It had been smoothed into a clinical surface that could have described any patient on any day.
What the Medical Record Thinks Happened
The medical record of our reciprocal IVF journey is, in its entirety, a story about hormones and timing. It knows my estrogen levels on Day 6 of stimulation. It knows that my wife’s retrieval produced fourteen oocytes, nine mature, six fertilized, three blastocysts, two euploid. It knows the dosage of every medication I injected into my stomach over nine days and the exact thickness of my uterine lining on the morning of transfer. It is a precise and complete document in the way that a blueprint is precise and complete: it tells you the dimensions of the room but not what it feels like to stand inside it.
What the record does not include: the voicemail from the nurse who called my wife Daniela instead of Danielle for the entire first month, until I corrected her, and the small flinch my wife made each time she heard it. The exact language of our insurance denial — reciprocal IVF is not a covered benefit as the diagnosis of infertility requires the inability to conceive through heterosexual intercourse — which I have memorized because it lives in my body the way a song lyric does, unbidden and permanent. The conversation in our kitchen on a Sunday in October 2019 where we decided whose eggs and whose body, which took forty-five minutes and a spreadsheet and three years of prior discussion to arrive at and which the record reduces to a single line: Plan: reciprocal IVF, Partner A egg donor, Partner B gestational carrier.
Partner A. Partner B. Not even our names, in the part that mattered most.
The National Institutes of Health (NIH), as the nation’s medical research agency, oversees the institutional frameworks that shape how fertility patients are documented, categorized, and processed in clinical settings. The protocols that produce chart notes like mine — the flattening of a three-year emotional and logistical undertaking into tearful but agreeable — don’t come from individual cruelty. They come from a documentation culture that treats the patient’s experience as irrelevant data, noise that interferes with the signal of follicle counts and hormone panels. The record is not neutral. It is a document produced by a system that has decided what counts as information and what is discardable.
The Notes App Era
I started keeping my own record without realizing that’s what I was doing. It began as fragments in my phone’s Notes app — the kind of half-sentences you type with your thumb at 3 AM because you’re afraid you’ll forget something that feels important but that you can’t yet articulate why.
The first note I wrote, on June 14, 2019, says: The intake form asks ‘father’s name’ and there is no field for ‘donor’ so we left it blank and the receptionist called to ask why.
The second, from July 2: Insurance pre-auth denied. Called. They don’t know what reciprocal IVF is. Transferred me to a nurse who also didn’t know. She put me on hold for eleven minutes and then told me to submit an appeal letter. I asked what to include in the letter. She said ‘whatever’s relevant.’ I asked what’s relevant. She said she didn’t know.
By month four, I had sixty-three notes. By month nine, over two hundred. They were not organized. They were not edited. They were not for anyone. They were the raw material of an experience I could feel being flattened in real time, and I was keeping it because I had a vague, inarticulate sense that someone would want the real version later — my child, maybe, or a future version of myself who needed to remember what it had actually been like before the story got cleaned up for presentation.
What I was doing, though I didn’t have language for it yet, was building a parallel chart. Not a journal — I’ve never been a journaler, and the word journaling implies a kind of self-care intentionality that makes me want to lie down. This was evidence-keeping. This was refusal. This was the document I would hand someone if they ever asked me to prove what it had cost.
What I Wish Someone Had Told Me About the Clinical Record
Here is what I wish someone had told me on day one: the medical record of your fertility treatment is not your story. It is the clinic’s story about your body, written in a language designed to protect the clinic, not to describe your experience. You need your own.
This is not a knock on individual doctors or nurses. Our clinic had people I loved — the nurse who brought me a heated blanket during a particularly brutal monitoring appointment, the embryologist who let me watch on the monitor as she performed the ICSI because she could tell I needed to see something. But the system they work inside produces documentation that is structurally reductive. It has to be. That’s how medical records work. They are not built to hold the weight of what is actually happening to you.
So here is what I tell people now, the practical advice I wish I’d received: keep a parallel record. Not someday — now, from the first appointment. Write down the things the chart won’t hold. The exact words people use when they deny you coverage. The way the waiting room smells — ours smelled like instant coffee and the particular floral sanitizer they used to mop the floor, and I can still conjure it instantly, which is odd because I was only ever there for forty minutes at a time. The conversations you have with your partner at 2 AM when you’re both exhausted and one of you says something raw and true that you’ll never repeat but that you need to remember happened. The questions the ultrasound tech asks that reveal what they think a family is. The dollar amounts. All the dollar amounts.
Write down the dollar amounts especially. The clinical record will note that you underwent a procedure. It will not note that the procedure cost $2,400 out of pocket because your insurance covered monitoring but not the retrieval lab fee, and that you put it on a credit card with 19% APR because the fertility clinic’s payment plan required you to pay in full before the procedure, and that you did this three times. That information — the financial texture of what it actually means to build a family through ART — exists nowhere in the official record. It exists only in your bank statements and your memory, and memory is unreliable.
When the Portal Crashed
The moment I understood why I was keeping my own record was not dramatic. It was mundane, which is how these things usually go.
Our clinic’s patient portal went down for maintenance on a Friday evening in March 2021. I know this because I was trying to check my beta hCG results — the blood test that tells you whether the embryo has implanted, whether you are, in the clinical language, pregnant — and the site simply would not load. I refreshed eleven times. I called the after-hours line. The nurse told me the results were in the system but she couldn’t read them to me because the portal was the designated communication channel, and she wasn’t authorized to relay results by phone. She suggested I try again in the morning.
I sat on the bathroom floor for twenty minutes. Then I opened my Notes app and wrote: The portal is down. They won’t tell me the results. I am either pregnant or not and I will not know until tomorrow and the not-knowing is a specific kind of violence that I think is by design.
The portal came back up at 6 AM on Saturday. The results were there. Negative. The chart note, uploaded later that day, read: Beta hCG negative. Patient notified via portal. No further action at this time.
No further action at this time. As if the entire thing — the nine days of progesterone injections, the two weeks of not sleeping, the way I had started referring to the embryo as the little one in my head before I could stop myself — was an action item that could be closed. As if the not-knowing, the night on the bathroom floor, the specific quality of that silence, was nothing.
That was the day I started being deliberate. Not just fragments anymore. A real document. Dates, times, exact quotes, dollar amounts, the names of every person I spoke to at the insurance company and what they said. I started keeping a spreadsheet of every appointment, every call, every form I submitted, every denial and appeal. I started saving voicemails. I started taking photos of the consent forms before I signed them, because I wanted a record of what I’d actually been given to read, not just what they said they’d given me.
This was not journaling. This was not therapeutic. It was administrative grief with a purpose. It was the construction of a document that could not be gaslit by a portal crash or a records request that came back with missing pages.
The Sprawl Problem
By the time our daughter was born, I had over four hundred notes in my phone, a spreadsheet with three tabs, a folder of 127 photos of forms and voicemail transcripts, and a Google Doc that was sixty-three pages long and had no structure beyond chronological. It was, to put it plainly, a mess. The mess of someone who had been collecting evidence for three years without a system for organizing it.
I tried to make it into something. I tried to outline it as a narrative. I tried to sort it by theme — insurance, medical, emotional, legal, financial. I tried to treat it like a research archive with tags and metadata. Each attempt lasted about a week before the volume of material overwhelmed whatever structure I’d imposed. The problem wasn’t that I didn’t have enough material. I had too much, in too many formats, and I was too close to it to see what shape it wanted to take.
What I needed was not a journal. Not a memoir, at least not yet. I needed a way to manage the sprawl — to take three years of field notes and find the through-lines without flattening them the way the clinic had flattened mine. I needed something that could hold the structure of a long document without me having to build that structure myself from scratch, because I was tired, and I was working, and I had a newborn, and the idea of creating an organizational system from nothing felt like one more infertility task on a list I’d already completed.
I started experimenting with AI novel writing software that could organize the sprawl without turning it into a project — not to generate the feelings or the language, which were mine and had to be mine, but to manage the volume. Three years of notes, four hundred fragments, sixty-three pages of unstructured documentation — that’s not a writing problem, it’s an information architecture problem. I needed a tool that could handle the architecture while I handled the voice.
The distinction matters. The Authors Guild, in their AI Best Practices for Authors, draws a clear line between using AI to generate creative content — which they note produces “generic mashups of pre-existing works” rather than authentic testimony — and using tools to assist with the organizational and structural dimensions of a writing practice. My field notes were already written. Every observation, every dollar amount, every exact quote from an insurance denial — that was all human, all mine, all drawn from the specific sensory and emotional reality of living through it. What I needed was a way to arrange it, to see connections across three years of material, to find the shape without imposing one that didn’t fit.
What Your Child Deserves
Here is the argument I want to make, stripped of the personal narrative: fertility patients should be keeping their own parallel charts from the first appointment. Not for social media. Not for a memoir, necessarily. Not even for yourself, though you’ll be glad you have it. You should keep it because the clinical record is not neutral, and the story of how your child came to be deserves more source material than a billing summary and a chart note that says tearful but agreeable.
When my daughter was two, she asked me why she doesn’t have a dad, and I told her about our donor — a person we chose, a person who gave us something we needed, a person she might meet someday if she wants to. It was a good conversation, age-appropriate, honest. But afterward I sat in the kitchen and thought about what I would tell her when she’s older and the questions get harder. When she wants to know what it felt like. When she wants to know why we chose reciprocal IVF instead of either of us getting pregnant with our own eggs. When she wants to know about the failed transfers, the insurance denials, the night I cried on the bathroom floor because the portal was down.
The clinical record will not give her any of that. The clinical record will tell her that her mother’s lining was 9.2mm on transfer day and that the embryo was graded 4AB. It will tell her that her genetic mother produced six blastocysts. It will tell her that the procedure was successful. It will not tell her what it cost — not just in dollars, though the dollars are part of it, but in sleep, in fights, in the specific exhaustion of explaining your family to a medical system that was not built to see you.
That’s the record I’m building. Not a polished narrative. Not a hero’s journey with a baby at the end. A document that holds the real shape of what happened — the bureaucracy and the grief and the dark humor and the joy that arrived without erasing what came before it. A document that says: this is what it was actually like. This is what they wrote down about us. This is what I wrote down about us. These are the parts that are mine.
How to Start
If you’re in treatment now, or about to start, here is what I’d tell you to do, in the most practical terms I can manage:
Open a note on your phone right now. Date it. Write down what happened today, in whatever language feels true. Don’t edit. Don’t perform. Don’t write it for an audience. Write it the way I wrote my first note — the intake form asks ‘father’s name’ and there is no field for ‘donor’ — with the specific, unpolished detail that makes it yours.
Save every form you sign. Photograph it first. Save every denial letter, every explanation of benefits, every voicemail. If someone says something important on a phone call, write it down immediately after — not the gist, the actual words, as close as you can get. Note the date, the time, the person’s name if you have it.
Don’t wait until you have a system. The system will come later, or it won’t, and it doesn’t matter. What matters is that the material exists. What matters is that when your child asks you, at seven or twelve or twenty, what it was really like, you have something to hand them that is richer and truer than what the clinic kept. What matters is that the story of how your family was built is not authored by the people who billed you for it.
Keep your own chart. The one they keep is not enough.