I kept a girl and a boy in the freezer for five years.
OK, not a girl and a boy per se. But a male and a female embryo.
After undergoing all of the necessary bits of IVF preparation, we ended up with three viable embryos. We knew they were viable because we had them genetically tested, which also meant we knew their genders. In a major sci-fi move, this allowed us to choose the gender of our own child, which was beautiful as we both wanted a girl. It was a little bit of privilege, but after the years of infertility that we endured, why not take it.
It costs money to keep your embryos in a facility, which we paid in full for three years. You might as well hold onto them for awhile in case you decide to have other kids and you have difficulties again.
Along the way, there were some gaffs on behalf of the financials department. Shortly after having our daughter, we moved. I was surprised not to get a bill for storage, but I was assured by others that the facility would come looking for the money when they needed it. Eventually, I received a voicemail saying that they were about to send me to a collection agency as I hadn’t paid for embryo storage yet. However, I have never received any bills, which I frantically called to tell them. They were very soothing about the situation. Didn’t have our new address on file, so they took it down and happily charged my credit card $1200.
The next year, I still didn’t receive any embryo storage bills, but I did once again got a voicemail saying that I was about to be sent to a collection agency for not paying a bill I hadn’t received. I was more angry than frantic that year, telling them I had already changed my address with them the previous year, but obviously something had gone wrong there. Took down my new address and double checked their systems, as they figured there had been some miscommunication between their technology. I also asked if I could start paying this bill monthly, as $100 a month is a lot more palatable than $1200 all at once. They said they would also make note of this. Spoiler alert: they didn’t. But they did get my address right this time.
After paying for three years of embryo storage, my husband and I discussed whether or not we wanted to continue paying this ridiculous sum of money. We were pretty sure we were happy with just one child. If we changed our mind on the road, there’s the hope that we could conceive naturally, or I could go through the whole thing again. While it wasn’t fun pumping my body full of estrogen and progesterone, it would be cheaper than paying for continual storage.
You have options when it comes to discarding your embryos, but Jon and I both decided donation was what we wanted. We were both highly in favor of helping other struggling couples, and we knew that our embryos were genetically pretty good. While some people would be weirded out by the idea of having a child who is genetically theirs walking around without their knowledge, I think it’s pretty cool. It wouldn’t really have an effect on my daily life. I did sort of anticipate that someday we would find out if our embryos had been used. DNA testing is so common these days, surely it would be more common by the time any such children grew up. It sounds fascinating to me to find out in 20 to 30 years that I had some genetic offspring walking around. Call me crazy.
We told the fertility clinic of our decision immediately after paying another $1200 bill. We wanted to get this squared away before we owed any more money.
However, it turns out that donating embryos isn’t as easy as “we already had genetic testing and counseling through your organization, thank you very much.” We had to undergo another round of genetic counseling. There had been some minor flags on our first round that we as prospective parents were willing to overlook, but the clinic apparently wants to offer completely flawless embryos to their clients? (Is a completely flawless embryo biologically possible?)
Because my mother had breast cancer AND we are Jewish, I had to undergo testing for the Bracca gene mutation. (Yes, there is a correlation between being Jewish and developing breast cancer. Why? Who knows. So good to be chosen.) All I had to do for the test was spit into a vial and send it off, but I walked around for several days thinking I would definitely have both of my boobs lopped off to prevent developing breast cancer in the future. I sort of came to terms with it, and then my test results came back negative. Yay!
But there was a further complication in this situation. Since having Lily, my dad was diagnosed with Parkinson’s. His dad also had Parkinson’s. While it’s not hereditary, it’s extremely rare for it to show up two generations in a row. With this new information I was now expected to have my dad tested for a rare form of genetic Parkinson’s.
On my parents' next visit to their neurologist, the doctor was surprised. He insisted Parkinson’s was not a genetic disease and no such testing existed. In response to this, the clinic sent me a list of facilities that would complete the testing in our area. Since I am clearly not my father’s wife, I handed the list off to my mom to make some calls.
Of course, my mom cannot stop her entire life to cater to the fertility clinic. She was dealing with a lot at the time, including my father’s worsening medical, mostly mental, condition. She called the places given to us, and no one said they provided the genetic testing she asked about. I relayed this message to the clinic, who simply said that we should be able to get the testing from one of the geneticists they provided.
This back-and-forth took several months. Somewhere along the way, the person in the embryology department who was in charge of my case changed. Somewhere else along the way, I asked what was going on in terms of paying for the embryos. At one point, I was told that my payments were frozen while we got this all figured out. As time stretched on, I asked again if payments would be frozen. That time, I got no response.
That August I received another phone call from the financial department along with a bill for a full year. I called them back, my frantically angry face back on, to desperately look for some kind of answer to something. Could they please check into how long my account was supposed to have been frozen for? I was being billed for another year even though I had been told I wouldn’t be. I expected the charges to have possibly kicked back in somewhere along the line, but it shouldn’t have been for a full $1200.
I spoke to someone calm and understanding. It was clear she’d been through some training on how to deal with crazy emotional people, which is good, because when you’re dealing with overly hormonal women, which I don’t say lightly, as you literally have to inject yourself with estrogen, testosterone, and/or progesterone during many fertility processes, is a good thing. She did a little research and found emails on their server that said my account was frozen. (Why someone hadn’t looked at my file prior to sending me a bill is beyond me.) At that point, she informed me that I was in something called a letter series. This meant that they could not stop the bills from coming to my house, but she would put a note somewhere in my file that I did not have to pay them as we continued to work towards embryo donation.
Honestly, that seemed a little odd. It’s their system. Why can’t they cancel the bills? But okay. Whatever. Fine. I just dealt with some minor anxiety as a monthly bill for $1,200 still got mailed to my house. Money wasn’t added onto it, but still. A few months ago, they also started sending emails, several a month. It felt like the pressure was mounting despite assurance that it wasn’t.
In April, I got another phone call about payment. I explained the situation to the patient woman on the other end of the phone. She looked through my file and confirmed the same story. Again, it would have been nice if she had done that prior to calling.
MEANWHILE, my father’s Parkinson’s symptoms started to improve. Which, it turns out, is not possible. Parkinson’s is a degenerative disease; it never improves. The fact that my father was regaining strength and walking abilities meant that he didn’t actually have Parkinson’s.
How could this misdiagnosis have happened? Diagnosing Parkinson’s in the first place seems a bit imprecise. There isn’t a specific test that definitively determines if a patient has it. Diagnosis is based on medical history and symptoms. My dad did take a skin test to help determine it, but that’s an experimental process whose accuracy is still up for debate.
My mom had the neurologist write a note on prescription paper saying that my dad doesn’t have Parkinson’s, nor does he have a form of genetic Parkinson’s. I was relieved when I got to scan the document and send it off to my embryology coordinator (or whatever her title is), to finally get the okay to donate our embryos to help struggling couples.
Except I got an email back saying that the clinic still wanted my dad to undergo the genetic testing to prove he doesn’t have Parkinson’s. I reminded them of how much trouble we’d had finding someone who would even do the testing and the fact that genetic Parkinson’s is extremely rare. A reply told me, kindly and with citations from medical texts, that genetic Parkinson’s actually makes up 25% of cases. Okay, so more than I thought. Still, I had never provided genetic proof that my father DID have Parkinson’s. All they had was my word on a form, not even a note from a doctor. You would have thought this doctor’s note saying my dad didn’t have Parkinson’s would have counted for something. I sent back an email with that sentiment and was told that that message would be taken to the director at their next meeting.
Two months went by.
Last week, I got a phone message from the financial department. Returning their call got away from me, and when they called me again at work on Friday, I had a free 30 minutes. I answered the call because I thought it would be another quick conversation where my file would again be checked retroactively and we’d all move on with our lives.
The woman on the other end of the phone said they were calling to collect $1800. I said I felt frustrated, she asked why, and I explained that I had been through this several times before.
But instead of offering to check on the situation, this woman insisted that regardless of everything, I owed the money. My heart rate sped up and I started to panic. I told her that I had been told by more than one person in the financial department, as late as April 23, that I still did not owe money.
In not so many terms, I was told tough noogies. “You have to look at it from a financial perspective,” she demanded of me. “We’ve been storing your embryos for free for a year and a half. That’s a big expense on us.”
“I know,” I said through gritted teeth. “Which is why I kept asking about it. But your own department continued to tell me that I didn’t owe the money all the way up until April-”
At which point, she cut me off to give me the same song and dance about owing the money. She also sassily asked me why it was taking so long to finish the donation process.
I then became a lot less than dignified.
In my defense, I was slightly hormonal and am doing some research into whether I may have a condition regarding that. Time began to run short as my lunch period ticked closer. Being a teacher, I’m at a point where I have one single more paycheck coming in before I take a two month break from an income. The timing could not have been worse. I ended up curled up in a ball next to the door of my classroom hyperventilating and telling Ms. Biatch that I might be having a panic attack.
“Do you want me to call an ambulance?” was her response. I declined.
It was around then that a student barged into my room - I hadn’t realized the door wasn’t locked. I screamed, “Get out!” at him repeatedly until he did, which added all new levels of anxiety to the horrific conversation.
Ms. Lady did not care that she was ruining my summer. She did not care that HER OWN DEPARTMENT had lied to me. She snipped that she needed the money and that was that. I debated hanging up on her, especially as time ran shorter, and I probably should have. I should have demanded that she speak to the embryology department before I pay, but silly me, I assumed that had already been done. (Considering how poor all previous interdepartmental communication had been, I have no idea why I made that assumption.) So in hysterical tears, I (maturely) screamed my credit card number over the phone to her.
When payment was made, Ms. Aggressive changed her tune. She thanked me and said she would get in touch with embryology and find out what was taking so long. She would have them call me with the next steps, though I told her that what I was waiting for was an email back FROM EMBRYOLOGY, so the ball was in their court. She said that she would put a note in my file to waive my fees for the next six months.
THE NEXT SIX MONTHS?! I thought I was almost done with this process! It shouldn’t take another six months! That was useless. Had she lessened my $1800 payment by six months it would have been more helpful. In fact, the only bills I had ever received were for $1,200, so I wasn’t sure where the extra $600 had come from anyway. Which I had told Ms. Bad At Math and People Skills, but she hadn’t cared.
I could barely choke down my lunch after that. I relayed the story to my coworkers, one of whom highly encouraged me to start a massive email campaign. I began drafting a letter almost immediately.
Interestingly, while I was on the phone with Ms. Crazy Pants, call waiting told me that RMA was calling. I thought maybe there was some kind of glitch and waved it off. Once the dust settled, I saw that I had a voicemail from my embryology lady. She said a decision had been reached on my case (see? Not six months at all, but simultaneous to the nearly-heart-attack-inducing phone call) and I should call her back.
I left her a voicemail on which I must have sounded completely depressed and mentioned that I’d just had an awful financial experience, and she quickly returned my call. “Let me start by saying I had that transaction voided.”
A mixture of emotions flooded me at that point. First of all, YAY! BOOYAH! TAKE THAT, CRAZY MONEY LADY!!!! I DIDN’T owe $1,800! What now?!
But also, I really had been gasping for air on that phone call. The fact that I was that close to some kind of medical incident and the entire thing could have been avoided is, in my opinion, unforgivable. Thank god I wasn’t currently undergoing an IVF or IUI cycle and was full of extraneous hormones. Or that I don’t have an underlying medical condition. Any combination of those things could’ve really screwed my actual health.
Initially, I thought RMA may have chosen the dragon lady to call me because she was known for being mean and horrible, and they wanted their money. However, after speaking to several people who are clients and others who work for the company, I’ve changed my mind. I think she’s just an anomaly of the system who I had the misfortune of speaking to that day. I have been trying to figure out how to lobby a formal complaint against her. The company doesn’t make it easy to do. I get that many people on the Internet over complain and you wouldn’t necessarily want to set up a direct complaint line when hormonal women are involved, but again, the fact that this could have led to something much more serious if my personal situation was different is in no way OK. More than anything, I want to prevent something more serious from happening to someone else in the future.
Following the phrase “let me start by saying” with something positive let me know that something not so great was about to follow. And that not so great thing is that RMA is not going to accept our embryos for donation. Apparently, I am a carrier for some thing called factor 11 disease. This could lead to excessive bleeding and in some cases mild hemophilia. There are a lot of mights and possibilities in there, and that was reflected in my agent's voice when she presented the news. It didn’t really sound like she agreed with the decision either. She also added the caveat that they have a new director, who is very conservative about these sorts of matters. I’m sure the unsettled Parkinson’s thing was another part of it.
Maybe it’s because I didn’t have to go with donor embryos, which I’m sure adds a whole other level to a stressful and emotional process, but this seems like a lot of discriminating against what could be perfectly good babies based on somewhat arbitrary factors. There is literally never a guarantee that an embryo is going to produce a healthy baby. I certainly learned that when I learned about chemical pregnancies and from various friends who suffered miscarriages. When your body is attempting to accept an embryo made from the DNA of others, I imagine there are so many biological factors that could get in the way of successful conception that you might want to maximize your chances. OK, so I’m a carrier for a disease that can sometimes produce a negative health condition. The only reason we know this is because I went through genetic testing mandated by a fertility clinic. Chances are everyone’s got something funky hiding in their DNA that they’ll never know about, but they’re allowed to go out and produce their own embryos naturally and not have anyone tell them it isn’t worth it.
Of course, in natural situations, you aren’t paying a company tens of thousands of dollars to help you get pregnant.
It’s all different in the situation. I guess I just wish I could help a couple who is struggling so greatly that they made it to the point of needing a donor embryo. I know such a mild version of that pain, and I wish I could alleviate it for others.
Not having my unknowing children possibly walking around in the world is not going to change my daily life. But I really liked the thought of it on top of the helpfulness. I felt a quiet sort of sadness when I found out I wouldn’t be able to complete someone else’s family. A friend of mine reminded me that donating the embryos to medical research, the next option besides throwing them out, will be helpful in its own way, and I have to look at it like that, I know. But I still feel a little sense of mourning for the lives that could have been.
And now, we know to just what extent the stress of the situation could have been avoided.
Why is trying to help someone in a way that most people could not so darn difficult?
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