One of the most frustrating things about being in our position ironically is the medical field. The very people who are supposed to be caring for you and helping you (and who you are paying a lot of money to for that service) often fail you. I sit here writing this after a crying meltdown in my kitchen because I am so frustrated. Thankfully my daughter was upstairs playing so she was not scared by the whole episode. I have seen a lot of doctors...some good, some bad, some really bad. And most recently one very good. But I have been a patient with my current specialist for over four years and I am beyond angry that I cannot get a call back from a doctor within a decent amount of time, That I am currently in need of an order from him for medicine that I cannot get and time is ticking by, every second valuable and I need this medicine and still no word. I am the middle man between the new specialist, a reproductive immunologist from New York and my current specialist here. I have to call one and tell them what the other one said because no one is really communicating directly with each other very well and if I didn't force this communication it just wouldn't happen and my health would suffer in the process. I find out on a Saturday that I need this medicine NOW and when I call the doctors office the nurse kindly tells me, "We can't do that today. It's Saturday. It will have to wait until Monday." As if people's medical needs vanish between Friday night and Monday morning. Unacceptable. And not to mention that same nurse also informed me that I recently tested positive for an MTHFR gene mutation. Why have I not been tested for this before now? Why is a nurse telling me this info and not the doctor? I ask her what that means and she says, "I don't really know a lot about it. I will have the doctor call you Monday to talk with you about it." Really? Well it's after noon on Monday and I have not heard from doctor about this or the order for my medicine. So I have no choice but to research this MTHFR myself on the Internet....and I have an anxiety attack. A gene mutation that causes a person to not be able to process folic acid, a very important nutrient in pregnancy and for the developing baby, and it causes a person to have problems with blood clots. The clots are usually so small they do not pose a threat to the mother's health, but when she is pregnant they can essentially "clog" the placenta with these clots and then blood can't get through to the baby. And women who have this mutation have a a greater risk of delivering a low birth weight baby, a baby with Down Syndrome, a baby with Spina Bifida and a baby who is autistic. Seriously, you don't think a doctor who can answer my questions should deliver such a blow!!??
Let me share with you a day in the life of a woman who has had several miscarriages. She wakes in the morning and the first thought in her head (usually after having nightmares while she slept that she is having a miscarriage) is, "I wonder if my baby is ok." She gets out of bed and is scared to do anything more than that but she has to. She has children, a husband, a house, family that need her attention. She tries to take it easy all day so she doesn't "cause" herself to have another miscarriage. She feels nauseous and exhausted but is thankful for these welcome signs. She fears going to the bathroom and actually holds it because she is terrified she will find blood. She is happy and excited but won't allow herself to feel this. In short she is just plain scared she will have another loss. She has a lot of anxiety. Now imagine that her doctor won't call her back in a timely manner. She gets scary news about some weird gene mutation and no one is available to answer her questions or reassure her. It's like pulling teeth to get necessary medicine. She depends on her doctor to help her but when she calls his office she just feels like no one understands or is making her treatment a priority. She is completely at her doctor's mercy and he is failing her. It just should not be like this. Let me tell you a good doctor can make all the difference for these women. And considering that studies show that women who recurrently miscarry have greater success in subsequent pregnancies when they are given extra "TLC" from their doctors. That means good and frequent communication and reassurance. It reduces stress and everyone knows a stressed out mama is not good for baby. I have been this woman, pregnant again after many losses. I have been this woman many times. And the stress of it is enough all on it's own. We don't need the added stress from the medical professionals who are supposed to be helping us, but we often get it anyway.
I should be clear, I have some amazing doctors I have worked with. The doctor from New York that we just recently started working with is AMAZING. I have never even met him in person but he gave me his email address. He emails me back right away and he has even called me on a Friday night and Saturday afternoon to discuss my treatments with me. My obgyn is awesome and even my current specialist is good and has been for the last four years (minus the last few days when suddenly they seem to have lost my phone number). But this is just unacceptable. I can't imagine if I called Riley's pediatrician and said Riley was in severe danger that the pediatrician would say, "Well sorry. It's Saturday. She can have the medicine she needs to save her life on Monday." I can't imagine if a person was going to get the news that they had cancer that a doctor would have a nurse call to tell them and then say, "But sorry, I can't answer your questions. We will just call you next week." So why is it ok to give a lower standard of care to the recurrent loss mother? Why aren't we and our unique medical problems as important as these others? It is another part of the stigma attached to miscarriage that even doctors don't realize they are playing into. We are not as important. Our problem is one that is quiet and private and uncomfortable for people to talk about, even medical people...so they don't. Our babies aren't real yet. They aren't born. Therefore they won't get the medicine they need. And when faced with the demands of a doctor's busy day, we fall by the wayside. It is wrong and it is tragic. What else can I do but fall to my kitchen floor and cry? And sit here, still waiting as I close this post, for a doctor to call me back and help me.
