Full disclosure: I had a miscarriage on Monday morning around 3:30 a.m. I was due in March. The baby’s heart stopped beating around the six week, three day point of gestation. I found out on Tuesday, August 16th, but only miscarried this week because I opted to miscarry naturally. I had a miscarriage at home a few years ago, and it wasn’t so bad. That time, I was much farther along. The baby stopped growing around 12 weeks; My miscarriage was around the 14 week point. Being earlier in the pregnancy this go around, I assumed the process would probably be less traumatic for me. Boy, was I wrong.
The miscarriage was so horrific that I had my husband rush me to the ER. I sat there in the middle of the night stanching the blood with a big, fluffy towel, trying to remain calm in front of my kids, who were sleepy yet questioning sitting in the backseat.
There was so much blood, so many clots. I was terrified. During the seven hours I was at the ER, my hemoglobin dropped from 14 to 10. I was given three bags of fluids and had two open IVs in case they needed to give me blood. That’s how bad it was. Still, when I went home I was able to relax a bit since the clots had stopped and it looked like the “products of conception,” as the doctors so nicely put it, had been evacuated. The horrible, painful sonogram done by the evil (IMHO) sono tech found just clots left inside. I would continue passing them, said the doctor, who told me to follow up with my office and see a doctor — not my midwife.
Okay, so I called my office, telling them what the practice’s covering ER doctor told me. I showed up for my 2 p.m. appointment yesterday and — what’s this? — I’m told I am seeing the midwife, who I love, but is obviously not a medical doctor. I balk, but stick around. What else can I do? They send me into the sono room. I can see there are still dark patches inside, which are clots, the sono tech says. Is that bad, I ask. The tech tells me I have to talk to my midwife, but that clots can sometimes be passed on their own or reabsorbed by the body. Okay. So I go and talk to my midwife who tells me that she wants me to take Cytotec. (I find out later that this is simply one drug company’s brand name for misoprostol, a synthetic prostaglandin E1.) She wants me to take 200 mg every six hours for five days. It will cause contractions — “heavy contractions” — that will expel the last of the debris from my uterus. Oh, and it might make me bleed “a lot.”
I’m already feeling woozy from my lack of hemoglobin. I really don’t want to bleed heavy again, so I go home and start doing research. First thing I find is that what my midwife has prescribed is an off-label use for Cytotec, which is only approved by the FDA for the treatment of ulcers. I also find a treatment guideline that suggests, for an incomplete abortion (another way to say incomplete miscarriage), the dosage should be one 600 mg dose. The closest thing I see on that treatment guidelines related to my dose is for a “missed abortion,” which is basically when the baby stops growing but bleeding has not occurred. In that case, the dosage is 200 mg every six hours for two days. Hmmm. The whole heavy bleeding thing is freaking me out so much that I call over to the office asking for clarification. I explain what I’ve read, and how I know this is an off-label use of the drug, meaning it isn’t approved by the FDA. The girl who answers the phone puts me on hold and comes back with the following message from my midwife: “Diane says that she gave you the dosage she gave you, and if you aren’t comfortable with that then maybe this isn’t the practice for you.”
I am crushed. I am blown away. How could my midwife dismiss me this way? This is someone who gave me her cell number when we were waiting for a heartbeat. She was going away, but wanted me to text her when I got the results. Someone who hugged me when I was scared because my husband was less-than-thrilled about the pregnancy. I love her as much for the way she’s taken care of me this pregnancy as I did for her championing for me back when I was giving birth to Little Girl. I am hurt and scared and feel like I am being dismissed because I dared question her medical authority. Not one to slink away and just do what someone says without getting an answer to my questions, I called over to the main office. (This is a big practice with offices all over Long Island.) I speak to the patient care woman, who used to work with my husband at his old job. I tell her the whole story, even emailing her the links I read and she promises me that the doctor I saw in the hospital will call me back that night. She never did. I went to bed heartbroken and feeling very alone.
This morning I called back to the practice again. Kathy, the woman I originally spoke with, avoids my calls. I get Regina, one of the desk people on the phone. Regina, who has been there every step of the way with this pregnancy so she knows the deal. She tells me that the medical director wants me to come in. Is he going to do another sono or an exam, I ask her, because if he’s just having me come to chat I’d rather pay my $20 co-pay and just talk to him on the phone. I am still lightheaded, and don’t have someone to drive me to Garden City during rush hour. (And sit around the two hours I know it’s going to take to actually see this guy. The practice is notorious for making people wait and wait and WAIT.) She tells me to try and find a ride.
In between calls I reach out to another practice and spoke to a nurse. She is puzzled as to why I am getting Cytotec because I am still bleeding. “Your body is trying to expel what’s left. Why are they giving you anything yet?” We agree I am going to come in tomorrow to see the doctor there — the doctor, which is what I was told to see in the first place.
Okay, so I make a half-hearted attempt to get a ride. Anyone I would have asked has their own issues today. Work, sick children, etc. So I call back and tell Regina that I can’t get a ride, and that I will be getting a second opinion tomorrow at another practice. But I still want the results of my blood tests. Has my hemoglobin gone down more? She tells me she will try and get the results, and she will report in to the medical director about what I said. And that’s that. I am waiting for my results.
This has been a horrific summer. The pregnancy was a shock, but one that I was very, very happy about once my husband got on board. (He was initially scared and upset.) Still, as happy as I was, I never let myself get too excited about the pregnancy. I never expressed happiness at midwife appointments. First, there was no fetal pole. Then the heartbeat was slow when we did see one. I went through this once before, and I was heartbroken when I miscarried. This time, the emotional pain was worse. I haven’t cried so hard or so long as the night they told me the heartbeat stopped. I wanted that baby with all my heart and soul, but I think I knew from the start it was not meant to be.
Right now, the fact that my once-loving, caring, fabulous midwife has dismissed me for asking simple questions — and the fact that she couldn’t even be bothered to get on the phone with me to do it herself — is also breaking my heart. As someone who has issues with the whole area down below it takes a lot for me to trust someone. It’s pretty easy to dash that trust into little pieces, and that’s exactly what’s happened here.
Anyway, I didn’t write about my pregnancy earlier in the summer because I figured I’d never write about a miscarriage if it did happen, and I’m of the wait until the second trimester to share camp anyway. I probably would have stuck to my initial inclination if my midwife and medical practice had treated me with the respect and care I deserve as a woman, a customer, and a human being. The lesson, of course, is that we still have a LONG way to go before medical personnel get that patients are CUSTOMERS and PEOPLE. We are not a number on a chart or “a case,” as I was called this afternoon while talking to Regina. It sucks I have to find another doctor, but there are plenty of gynecologists and midwives out there. There has to be someone who will see me as more than just a co-pay. I just have to find her.
Note to anyone who knows me and is reading this missive: Some of you know what’s going on. I told my close friends when I got the bad news that the baby died. Those who didn’t know: Don’t talk to me about it and don’t talk to anyone else about it. If I didn’t tell you personally, I don’t want to talk to you about it. I don’t know how to say that more nicely, so I will just leave it at that.