Miscarriage, Rainbow Babies and What You Should Know

 

October is Pregnancy and Infant Loss Awareness Month. I've never really shared our story in this manner, but during this time of year I feel compelled to spread a small PSA around two topics: 

1. How to talk with your friends/family who go through this (and what to absolutely never say)
2. Why you should get tested for the not-so-much-talked-about Balanced Translocation condition which occurs in 1/500 people (women and men), ultimately resulting in a miscarriage.

 

Kyle and I had been married for four years before we started thinking about starting a family. Like everyone, you think it'll be easy. You never think it'll be YOU who experiences problems. Had I known at age 27 the journey we'd go through to get here, we may have started earlier - who knows. But I also look back with a sense of peace now, as I know, while not ideal or easy at all, we're stronger for it and we don't take for granted how blessed we are to have our two healthy children. Four miscarriages (3 D&Cs) and two live births (Jaxon and Norah) by C-section. I've had six pregnancies and five surgeries. One of those miscarriages actually occurred this year, much to our surprise. It was completely unplanned and quite the shock to even find out you're pregnant at 40. We had talked about having a third child for years so it just felt meant to be and we embraced it openly and with excitement…which made it even more crushing when the blow came once again that it had ended. But we had learned through the years to always prepare for this.

 

Which brings me to Getting Tested for Balanced Translocations….

If you've experienced recurrent miscarriages without much explanation, please please please ask your doctor about getting both of you tested for a Balanced Translocation. I'm grateful for my OBGYN because she had the intuition to know after just two of my miscarriages to dig deeper and get me (and Kyle) tested. I learned there isn't much info out there about BTs - mostly scientific white papers I didn't understand, a few subjective blogs - and it's not well known by the masses. Yet 1 in 500 people have this condition. To find out if you do, it's a simple blood test (but no, it's not cheap and most insurance won't pay for it), but we had our answer. A geneticist sat down with us and explained that two of my chromosomes (2 and 6) have an imbalance. Each chromosome has two pairs. When I was conceived one side of my 2 and one side of my 6 swapped places. (I like to think of myself as a mutant…the superpowers are yet to be determined.) All the data is there (we think, lol) so it balances itself out for me, but making babies gets tricky. It can pull the balanced side or the unbalanced side. It's a roll of the dice each time. Some women will have 5 babies and never know they had a BT, while others may have 5 miscarriages before they birth their first child. And there's no cure for it. So, I say all of this to help create awareness. The best thing we did was find this out. It helped us go into each pregnancy more mentally prepared, and we also knew that we had to get past week 8-9 for us to know it could be viable (depending on which chromosomes are affected by the BT may also determine which week the miscarriage could occur, so I'm told. Ours was always around week 8 because 2 and 6 are larger chromosomes.). When Jaxon and Norah were born, we had them tested as well - both are not BT carriers, thankfully.

 

Miscarriage occurs in 20% of pregnancies now, so how do you talk to your bestie about what just happened to them? Hopefully this takes some pressure off you: you don't talk, you listen.

LISTEN TO THIS: Check out 12:56 min into this SKIMM THIS podcast episode from today, October 28, 2021. They give some spot-on advice on this topic, which I agree with, but I'll also sum it up below, along with a few of my own thoughts: https://www.theskimm.com/skimm-this

 

First, what NOT to say:

• Don't ask "Why didn’t you tell me you were even pregnant?" Since many miscarriages can end early in pregnancy, many women haven't even told people they're pregnant. It's a huge, hard leap to share: "Hey, I was pregnant...but then I miscarried." It conjures up a lot of feelings of what they've been through, and that's why they didn't tell you - which makes it even harder because no one knows they're even going through this. This part sucks the most. 
• Avoid saying "Things will get better." This is like telling someone who's having a bad day to "cheer up." Or if you tell someone, "You can always adopt or use donor eggs, etc" it minimizes what they went through and what their plan A was on how they wanted to achieve a family. Don't go there.
• Never say, "At least it was an easy miscarriage" or "It just wasn't meant to be." Burn. This can be really hurtful and un-empathetic to someone living in this moment. 
• Don't say, "Just relax and it'll happen" or "Take a vacation and it'll happen." It truly doesn't happen that way.
• And please don't say anything connecting a person's age to when they should stop having babies. "Well, it's probably a good thing. You would've been 60 when they graduated high school." Gee, thanks a lot. Everyone's on their own journey, and thanks to science and living longer these days, there's no perfect age range to have a child anymore. People in their 40s and 50s pop out kids - it happens. And sometimes those kids change the world. When I miscarried in March of this year, we thought about trying again. But comments like this set me back and made me think twice. I'm not sure I should've let those weigh so heavily on our decision to stop, but they did. 

What you CAN say:

• If you don’t know what to say, say THAT. Be honest and say, "I don't know what to say, but I care for you and I'm here for you." This can be very impactful and shows you are just as at a loss of what's happening to them as they are. No one expects you to have the answers. Remember the movie, What Dreams May Come? I love the scene where Robin Williams says (in regard to their divorce), "I'm part of the problem. Not because I remind you, but because I couldn't join you." Stop reminding them, and join them.
• Say, "What can I do?" Instead of giving advice they may not be seeking, ask them how you can support them. It may also allow them to share more about what they're going through, which would probably be very healthy for them.
• Listen. Listening is one of the best things you can do in a situation like this. Listening is really one of the best tactics in general in life, but it's not practiced enough. More people need to practice it for longer periods of time. Instead of sharing all the things you think are helping them, try being quiet...and offering a comforting hug. Eventually they will find their words, but it takes time because they are probably buried very deep.
• Remember, the end is hard. What I mean is this. For anyone who's had recurrent miscarriage and has made the decision to not have a family or to have a family in a different way or maybe they've had kids but wanted to have more, but couldn't....there's a real grieving process they go through when making the decision to be done. We went through it, and are still going through it at times because of what happened earlier this year. It has been much harder than I thought to draw a line in the sand that says, "We are done having kids." I think because I always thought we'd have three, but it wasn't in our cards. So we grieve that third child (and the others) and know we are blessed beyond what we can imagine to have our two amazing kiddos who bring joy to our lives every day. But yeah, it's hard. It's the end of anything that's always hard.

 

I hope some of this helps for whoever is reading this. Remember, people don't "move on" from things like this, they "move forward" with it part of them, which I believe is a very healthy thing to do. This is probably true for any loss. I used to believe in all pain we eventually move past it - or we should at some point. Not true. I think about mine every day to some degree. Sometimes it's for a mili-second. Other times it's for longer because I watched something or heard a story and it brought it all flooding back in an instant. It's impossible to eliminate an experience this significant from who you are - and THAT. IS. OKAY. But you'll carry yourself differently in all things you approach from here on out. These hard moments don't have to chip away at you, but can build upon you as you weave left or right through life. 

If you're struggling with starting a family, have hope. I remember after my second miscarriage, I felt I was at a fork in the road which was completely out of my control. I would think to myself, is that it? Are we done? Is this what life handed us for a family...nothing? We could've stopped there and endured no more pain. We could've accepted it or adopted or something else, and we would've been blessed in other ways. The other path my eyes lead me down would certainly be bumpier, guaranteed. I knew it and the doctors said it too. But I knew with having a BT it was also possible - possible to eventually have a healthy child if we were willing to accept the struggle along the way. Fighting for our plan A would not be easy, but that was the choice we made. It's not for everyone, but it was right for us. To all the mamas-in-waiting (or papas) out there: you got this.

Our rainbow babies Jaxon and Norah are now 11 and 8. It was a beautiful spar to get here, but I watch them each day in pure awe. The shit and chaos that life will drag you through just to remind you of its beauty and love...