First OB visit: a whole new world
Babies in the waiting room, women with bellies stretching against pleasantly pliant fabric, smiling nurses and aides in floral print scrubs. I felt like an intruder. Where is my solemn waiting room? Here, at the Columbia-Presbyterian Maternal Fetal Medicine group, pamphlets with cute baby faces prevail. At the fertility offices, intruders with babies were quietly whisked away to back rooms. But now I am pregnant. No need to be shy or protective. Here they act as if all will be well. The inverse of the thinking I’ve become accustomed to: all is treacherous; all is uncertain; all is risky.
I like my new doctor, but I’m suspicious of her lack of scrutiny. No ultrasound today? No, and I find out I might only have two or three during the entire pregnancy. But I’ve had three in 9 weeks! The fuzzy black and white images have reassured me, the fluttering heartbeat, so fragile and real.
Dr. L. asks me what I want to do about screening. No, she asks me if I want to screen. Of course, I say. What do you want to do, she asks? My god, I have to make a decision. Isn’t someone going to do this for me? She presents the options clearly, offering up an NT (nuchal translucency), a CVS and amnio. I’ll take all three, I think. She explains my options and only advises on the NT for now. It is the least invasive and the one we can perform next week.
I jump on a Monday appointment. The NT (or nuchal fold scan) can help assess the risk of Down syndrome, and hopefully some other chromosomal abnormalities. I think of that little neck in last weeks scan — amazed that it had even formed so early. It was more like a curve that connected the torso and head, that huge head.
Here’s a description of the test from www.babycenter.com:
“The NT test uses ultrasound to measure the clear (translucent) space in the tissue at the back of your developing baby’s neck. Babies with abnormalities tend to accumulate more fluid at the back of their neck during the first trimester, causing this clear space to be larger than average.”
Okay, seems simple enough. Non-invasive. No risk. Dr. L. says if the results look good, I may decide not to do further screening. If it looks so-so, I can do the amnio. If it looks poor, we go for the CVS. The CVS presents a higher risk of miscarriage, but if we think there is a problem it is better to find out sooner rather than later. This all seems like a bit of a crap shoot. I know I will want the amnio no matter what, but she is right to point out the NT may ease my mind for a few more weeks.
I ask her if she ever advises against an amnio. She says never.
The Cost of IVF and potential funding
When I found out I was going to go the IVF route, a friend sent me a link to to Conceive Online. But I was too overwhelmed to look into it at the time. It was enough for me to focus on doctor appointments and the twice daily injections. When you are in the midst of IVF, it’s hard to raise your head up and look around you. Hey, being 10 weeks pregnant, it’s hard to raise your head up, etc.
I came across the site today and found some information I had been looking for about IVF funding. They state that the average cost per cycle runs about $12,500 and this was the case for us in New York City. But everything costs about 30% more than it should in Manhattan. It makes me wonder if other states might be less expensive. Somehow, I think not. The site also notes that 14 states require at least partial funding for IVF treatment (Arkansas, California, Connecticut, Hawaii, Illinois, Maryland, Massachusetts, Montana, New Jersey, New York, Ohio, Rhode Island, Texas and West Virginia). I found this information hopeful, but also disheartening. What about the other 36 states? Columbia-Presbyterian (where we went for cycles 1 and 2) participated in the statewide program and encouraged us to apply. We were lucky enough to have full coverage for that facility (they were in our insurance network). but ended up going out of network to the doctor who eventually created the cocktail that got us knocked up.
Here’s a link to Conceive’s article entitled “How Much Does It Cost.” There you will also find a link to the International Council on Infertility Information Dissemination where you can find out more information on funding by state.
IVF Costs and Financial Assistance
This past Sunday, I had lunch with a friend who I haven’t seen in a while. We were with another friend who was “in the know”, so it was hard to not break my rule of telling any more people than necessary. It was nice to talk about the pregnancy in a positive way. I tried not to make too many disclaimers regarding the eight week mark. I mentioned the IVF, not really wanting to go into that part of it, and she said her sister-in-law had just completed her first cycle with negative results. I felt a little ill thinking of someone going through that same disappointment. It’s hard, isn’t it? she asked. God, I said. It’s so hard. I wouldn’t wish it on anyone.
Now, we know I’m more of a wimp than most people, and that many women go through IVF with varying degrees of bloating and discomfort and cramping. But it’s the emotional part that can be so devastating. Having to deal with filling syringes with god-knows-what hormones, sucking it up and saying you can get through it, that it’s not for so long, that it will all be worth it. And it isn’t so bad when there is a payoff. It’s easy to say it will be worth it. But the hard part is dealing with those failed attempts.
My friend said, “I don’t know how they are doing it. It’s very expensive.” Yes, indeed. R. and I were lucky. Our insurance covers four cycles of IVF in a lifetime. How’s that for pressure? This cycle we went to a doctor who didn’t take insurance. We paid for everything upfront and are now waiting (anxiously) to see how we will be reimbursed. R. and I push the insurance statements back and forth between us with a “you deal with it” shrug — this particular insurance company is quite skillful at confusion. But it is the rare insurance plan that covers IVF. I suppose there is the question of medical necessity. And there are age limits involved. Our plan doesn’t cover it if the patient is over 44. And I think that is generous, because I kick myself for waiting so long to try to get pregnant. At times I wondered who I thought I was to even try, to defy nature and my body.
Cycles run anywhere from 10K to 15K, depending on the length of treatment and extra procedures. I’m sure in some practices it is even more. The medications themselves cost hundreds WITH insurance. Without, they cost upwards of $3000. We are very lucky to have good insurance. But not everyone does, which makes all of this even more frustrating.
My friend said, “People don’t talk about this.” I recognized the awe of the uninitiated. It reminded me of why I even started this blog. I had one too many conversations where someone said, “People don’t talk about this.” I went online and found that people were certainly talking about it, but in their own circles. I am lucky enough to have friends who have dealt with this and who offered excellent recommendations (not to mention moral support).
But there are financial options. One friend told me about Columbia Presbyterian’s (Center for Reproductive Care) financial assistance program. We didn’t quality because we had coverage, but Columbia participates in the New York State Department of Health Infertility Demonstration Program, which provides assistance to insured patients without fertility coverage. I’m sure other states have these programs. They must. I told my friend about it, so she could tell her sister-in-law, who sounds like she could qualify. Columbia also offered a loan assitance program. A nice thought, but it’s hard to think about going into debt to just try to get pregnant. When I looked at those forms, I shot ahead seventeen years to when I might be filling out college loan applications. At the time I thought, wouldn’t that be nice?
Numbers
I thought I’d write a little about numbers.
Dr. C., my first fert doc, gave us a 10% chance with IVF. Ten percent! That’s a tough number to swallow with such an invasive (and expensive) treatment. She tried to put a positive spin on it by telling me that is the percentage a couple without fertility problems has each month. Yeah, but… Dr. M. didn’t mention numbers and I didn’t ask until the day of the transfer. I figured I was going to do it regardless of the numbers. And not thinking about them makes it slightly easier. But they are there. They are always there.
SART, the Society for Assisted Reproductive Technology, an organization that helps set and maintain standards for ART clinics, posts statistics on their website. It lists national IVF success rates, as well as those of individual clinics – there is a handy online chart that notes type of diagnosis, age and treatment.
I try not to think too much about numbers because it makes me depressed. The charts confirm our 10% from Columbia, and NYU shows the promised 19%. But friends say not to pay attention to those numbers: they are only numbers. Friends say the doctors give those numbers because they don’t want you to be disappointed, that they want to be the heroes when it does work out.
I’m hoping they get to be heroes.
After two unsuccessful attempts at Columbia-Presbyterian, Dr. C. suggested an egg donor which would increase our chances to 75%. Quite impressive. Whenever she mentioned “donor” her face lit up. It made me want to lunge across the desk and shake her. But I did listen to her and started researching the process and we decided not yet. Instead we switched to Dr. M., who is in private practice and works with New York University. Dr. M. hasn’t suggested donor eggs yet, which leaves me optimistic. But she also may not know my IVF threshhold. I suppose if I kept trying it would eventually happen, but I’m not one of those women who can do this eight or nine times. We won’t be dealing with this for years because we don’t have time. Unless, of course, we go the donor route. I’m told time is not an issue with a donor egg. I could be 55 and still do it. Is that supposed to cheer me up?
