Learning to become my own advocate was not an easy thing for me to understand. Not to sound overly dramatic but it took losing my son to fully understand that the life you are given is yours alone. Not one doctor or person, regardless of their skill or talent level, is every going to fully understand or care about your life as much as their own. Maybe that was harsh. What I mean is no one is responsible for you and your health but you. I was very trusting of my doctor and had gone to her since I was 16 years old. When it came time to start a family I thought I asked all the right questions and perhaps I did (after all, hindsight is 20/20 as they say) but nothing could have prepared me for what was to come.
Perhaps if I had a different doctor, or placed more weight on preparation (or heck, even less time on preparation and got pregnant when I was in my twenties instead of being so concerned with getting married first) than none of this would have happened. But we can “if”, “and”, and “but” all we want. Point is it did. Question is, “Could it have been prevented?” and answer is, “Maybe”. That big maybe leads to my point about learning about a field I knew nothing about and I encourage others to do so as well. A field that I wish more people would open up about. I say “field” meaning the medical field or industry but what I really probably want or mean to say is I wish the conversation about pre-pregnancy planning was more frequent and most certainly got started way earlier than my 30s.
Knowing what I know now and my situation as well as learning about others in my community (whether that’s my fertility warriors or my loss sisters) – you’d be surprised at who “comes out of the woodwork”. How many there are with a similar story to share who can come together and provide strength for each other. But the sad part is, and the confusing part is this all happens AFTER the fact. Where does the community come in or this breadth of knowledge be extended BEFORE hand? When it’s needed most? How do we open up the conversation to prevent this from happening?
Speaking about my own experience with personal advocacy might seem specific, but hopefully the tools I share can be applied too many other scenarios. After the birth of my stillborn son, Dylan I was told “Sometimes this just happens” and “80% of the time we can’t figure out why”. And to this day that is somewhat true, however, I have found “clues” that any good detective would be proud of. This was the start of my scientific research journey of getting my “PHD in Pregnancy” as I call it.
Do I feel like everyone needs to do as much “homework” as me before planning a family? No. Do I think there are definitely some routine tests and precautions that should be taken before conception to be well informed of your own body and risks to insure success? Yes.
Find out about yourself and your partner. No one is going to do it for you, not even your doctor. I encourage you to take some simple steps to learn about your family history, your current state of health, your gene snps, and then educate yourself on some basic lifestyle factors that can contribute to your overall health as well as egg and sperm quality.
Family history is super important to understand. When my brother was 22 he had a stroke. Randomly! A healthy, thriving young guy and a clot went up to his brain. I had to write that down. Think about your parents, your uncles, your grandparents. It all matters believe it or not. We have a percentage of shared genes. One way to do this is to ask, write it all down. Make sure to ask specific questions and get specific answers. The more you know the more you and your doctor will be able to anticipate how your health will look in the future and possibly be able to either keep an eye out for red flags or, better yet, discover something so you’ll be able to take preventative measures or changes.
Your current health is important. Ask your doctor to order a CBC and a complete metabolic panel. Go for a physical and explain that you’d like to start a family and would like to be checked from head to toe. If they refuse – change your doctor. PERIOD. I used to be afraid, or lazy but I’m spending time writing this to prove the point of how important it is to find a doctor that will work WITH you and support you. It’s paramount.
Another way to go about this (at least in New York state) is to use Quest Direct. A lab that recently came out with direct-to-consumer testing. You simply go on their website and order the tests you’d like to receive. Now you must understand: you’ll need to know how to interpret these results so I do not recommend this if you are not a “seasoned professional”. I find this is useful if you’d like to RETEST a level (for example say you were low in Vitamin D and 3-4 months have went buy you made some lifestyle changes as well as started taking some supplements) this would be handy way to re-check yourself without have to schedule a doctor appointment, drive there, take the time to go, pay a copay and then have them write you the script to go to the lab, get blood and then pay that copay. So time consuming. Quest Direct is great for a scenario that doesn’t require a visit to your primary care physician or specialist. Also please remember: Google is not a doctor.
Understanding what’s current and new and being on top of cutting edge medical advances (like the hottest new trend in science right now: the human genome) can be used to your advantage. Do yourself a favor and get yourself acquainted with what’s happening in science right now. Follow a few medical professionals on social media, pick up a book that’s not fiction, speak to friends that have been or are going through health related things (even if it’s different than your own). Immerse yourself more and more in YOURSELF in my point.
Nowadays for as little as $200 you are able to not only get your ancestry (a little more family history to fill on the blanks), a bit of carrier testing and general wellness traits and predispositions but most importantly: your gene snps. The genetic makeup of an individual is so important to understanding how we operate on a day to day basis and what makes each of us unique it’s not wonder it’s so difficult to understand. The possibilities are literally endless. I’d recommend buying a kit from 23andme.com to learn more about yourself. The reason I love this kit is – it’s easily accessible and allows you to be totally in control, meaning your one step closer to being the best advocate for yourself that you can be. When your results come, you’ll need to download your Raw Data and run in through Geneticgenie.org to get your Methylation and Detox profiles. You might not understand all of this but they’ll explain a little bit about your results and the rest you’ll have to read up on. I recommend the book Dirty Genes by Dr. Ben Lynch. I’m not saying he knows all but he sure knows a lot and it’s better than not knowing at all. Only then can you make more educated decisions about your health and the health of your family. And start to form an opinion on what you believe in and feel is true and correct.
I also would like to suggest you and your partner get a complete carrier screening via Myriad Women’s Health (formerly Counsyl). Now of course this is a controversial topic in a way (depending on the severity of the genetic disorder of course) but the beauty of just screening is two fold. Not only will it give you peace of mind and understanding of what’s to *possibly* come but it also allows you to make the best possible choice for you and your family. And no one can take that away from you. Even if you want to roll the dice, you’ll be at peace knowing you’re making the right decision and that ladies and gentleman is priceless. The carrier screening my husband and I did AFTER Dylan was stillborn was an extensive and complete screening for over 176 rare genetic diseases and disorders. My results declared I was NOT a carrier for anything (or as my friend, who had struggled with IVF and endometriosis, told me about the test said, “oh you clean bitch” haha) but my husband was a carrier for Cystic Fibrosis. Because we weren’t BOTH carriers we are likely OK. I’m not going to go into much detail here but if you’re interested in what I have to say I suggest you speak to your care provider about your options, what would be covered, and what it could look like for you and your family to get screened.
Using scientific research has just be ONE of many healing modalities I have used on my journey towards recovery and wellness. I plan to share a more in depth look at each tool piece by piece (whenever that may be) so if you have any immediate questions feel free to reach out and chat otherwise stay tuned as I reveal more of my “healing toolbox” to you. Sending you love and light and hoping that my experience can affect you in the most positive way.