A (very) personal update and why I'm supporting these 3 orgs
As I sit down to write this, I realize we may be new friends - and you are just getting acclimated with me and Out in the Boons. I also understand that what I’m about to share is deeply personal and to be honest, I’m pretty nervous. I’ve never been the person described as an “open book”. In fact back in 2003, when Facebook was just getting started (yes, I was in college at the time) - my friends made a profile for me because I wouldn’t make one for myself. I’ve always been uncomfortable about pulling back the curtains.
Fast forward to now - when my husband and I have recently gone through an eye opening experience that I hope will open your eyes too.
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In May of 2016, Brad and I welcomed the most perfect, healthy and beautiful baby girl. I thought she was a boy my entire pregnancy so when she arrived - we didn’t have a name picked out. Ultimately, we decided on Liv - which is exactly what she reminds us to do. She is free and funny, silly and sensitive. She is the type of child that makes you wonder why we didn’t start having children sooner. Brad and I struggled to get pregnant so in many ways, she already felt like our miracle baby.
Two years later, we had yet another miscarriage, which was devistating. I remember thinking, “I can’t go through this again.” Somehow though, we picked ourselves back up and in January of 2019 we happily found ourselves expecting.
I was nervous. Yes - we had a healthy Liv, but we had had two miscarriages and until we made it through that first trimester - I wasn’t going to celebrate, or share our information widely. Week by week went by and everything was going well: healthy heart beat, our prenatal screenings were on track - everything was looking good. Before long, we found ourselves telling people and making plans - hell, I even gave in and surprised Brad with a gender reveal for his birthday (a girl!).
That feels like the last happy moment.
Two days after Brad’s birthday, we had our 19 week anatomy scan. Brad came with me and we joked about this being a 10lb baby (Brad is 6’5” and was over 9lbs at birth - his poor mama). Looking back I was so cocky. I had a huge event that week that I’d been planning for nearly a year and was about to jump on a plane to DC. I remember thinking towards the ultrasound technician, “Can’t you go faster? I have a conference call to get on.”
After the scan, I met with our doctor. She started, “So, everything looks healthy except I’m concerned with some of the long bones being very short.” I froze. You know that feeling you get when a cop pulls you over? That is what I felt like. Nervous and paraliyzed at the same time. “What do you mean short?” I asked. “Well, over all, the baby is trending very small - like in the less than 1% percentile and I’d like you to do some further testing.” Stunned, I choked out, “Well, what could that even possibly mean?” Anything from a fluke to dwarfism she told me.
The rest of the week is a bit of a blur. I still had to get on a plane to do my event (the organization raised over $1.3M) and had to compartmentalize my feelings. For better or worse (probably worse), Google became my new best friend and I frantically searched for things like: long short bones in baby and small, but healthy baby. As you can imagine, the results varied widely, but I was comforted by the fact that almost every article that turned up resulted in a normal, healthy baby. The fluke my doctor had told me was a possibility.
A week later, my husband and I found ourselves with a specialist who had her ultrasound technician perform another scan. Then, the specialist did an anatomy scan herself and they compared their measurements. What came up was that, yes, everything was small, but proportionate. Nearly all of the bones were only trending about 1-2 weeks behind which wasn’t overly concerning for them. All of the organs looked good. “I’d like you to see a specialist at UCLA who is an expert in skeletal dysplasia,” the doctor said. “If your baby does have a condition, it is so rare. We don’t see it very often and therefore, she is the best person to see because she sees this on a daily basis.”
I should pause here to communicate that what happened in the next 24 hours was not only a miracle, but a crazy front row seat into how broken our medical system has become. Within those 24 hours, we were able to get an appointment with this UCLA specialist who is perhaps the highest ranking expert in her specific field in the country, if not the world. We are so fortunate she is practicing at a hospital in driving distance to us AND that she had an opening. The amount of time I spent on the phone working to get my insurance to approve this visit was insane. To make a long story short - minutes before seeing the doctor, I ended up just signing a paper saying I would cover the costs out of pocket if my insurance company didn’t approve the authorization because I was so desperate for this information and the insurance company wasn’t moving fast enough.
Once again an ultrasound technician was scanning our baby. At this point, breaking down in front of strangers who were poking and prodding me was normal. For a person who rarely is emotional in front of others - this was new for me. As she was scanning away, the expert doctor came into our room and took over. In less than five minutes she said, “Ok...ok….I know what this is.” We held our breath as she told us our baby, sadly, had a fatal genetic disorder called Rhizomelic Chrondodysplasia Punctata. I’ll let you do a Google search if you want to know the ins and outs of it, but all I remember hearing is: less than 60 living people in the world... and most children who survive birth die before age two. I remember her saying, “Even if you decide not to listen to me and go to Alaska to deliver this baby far away from here - I would still give you this diagnosis. And I would tell you - do not let them resuscitate your baby.”
It’s hard to describe the feelings following that appointment. Of course, we were crushed. Crushed isn’t even a strong enough word. At this point, I was 21+ weeks along. We knew the baby was a girl, I had been planning out the girls rooms to include two beds and I had felt her moving around all the time. It was like having an outer body experience of living in a nightmare I couldn’t wake up from. Like, how can this be happening? This is the type of thing you read about in the newspaper, not actually live. At the same time, for us, we had clarity - and that provided a lot of mental relief. For weeks at this point, we had been driving ourselves crazy between having spouts of hope to wondering what the worse case scenario might be. Thoughts about what caring for a child who is healthy, but different ran through our heads. Were we strong enough to handle that? After all, life is hard enough (and I realize I live a very privileged life); it’s only natural to want your child to have the easiest go. After hearing our baby in fact, would not be healthy - it turned our thinking towards choosing mercy over life.
I never expected to be a person who talked about ending a late term pregnancy let alone be a person to experience one. As a feminist, I’ve always been a pro-choice, but the experience I’ve had first hand following that UCLA visit will forever change me.
In some ways, I am incredibly lucky and have noticed micro-blessings throughout. To have accurate information for us to make a decision - microblessing. To be surrounded by doctors and nurses who were compassionate to our situation verses judgemental - microblessing. To have health insurance - microblessing. To have the resources to pay for copays, spend countless hours on the phone with medical providers and insurance companies and the ability to take time off work - microblessing. To have an unbelievable network of friends and family who are supportive and loving - microblessing.
At the same time, like I said above, I had a front row seat to a lot of injustices. I learned that that in California where I live, one can only have this type of procedure up to 24 weeks. Had we found out about our situation or were unable to meet with the doctor at UCLA even a week later, we wouldn’t have met the timeline. I learned that some hospitals who operate under a religious health care system, do not perform the type of procedure we needed. They can also require you to do cremation and involve a funeral home - an entirely different level of emotional trauma when it is required (for the record, if that is what someone wants, I’m totally supportive, just not when it is mandated). I learned how misogynistic our healthcare system really is. I learned that everyone has an opinion and that even when you are at your most emotionally vulnerable state - those people will still fight to get their beliefs across to you.
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It’s been a few weeks now and I am healing physically, mentally, and emotionally. Brad and I have been through a ton of tests and have learned that while our condition is very rare (less than 1 in 100,000), our future pregnancies have a ¼ chance of having this condition again - making having children naturally unlikely. That might be the hardest part: learning that for us, this isn’t a fluke, but just really really bad genetic luck. It isn’t lost on me that Liv really is our miracle baby - and that we are beyond fortunate to have her.
Our experience has opened my eyes and ears in a totally different way. It breaks my heart (and lights a fire in me) to the fact that women’s reproductive rights are under threat more so than any other time in the last 40+ years. I can’t help but wonder if changing the ratio of women to men decision makers even slightly - what that would do. I question what it will be like for Liv when she becomes reproductively mature - will she be allowed to make decisions that are best for her and her family?
While all of these thoughts float around my head, I’ve decided not to be idol. Being a mama and wife while running my own business are my priorities, but I can dig deep to give time and resources to organizations who I believe are doing good work. Here are some of them below:
Planned Parenthood: A 100+ year-old national organization providing women with reproductive and general health care. PP also advocates and educates at their 600+ centers across the country serving millions of women each year.
Super Majority: A newly formed membership-based organization that affirms and builds women’s power and serves as a one-stop shop for advocacy, community building, and electoral participation aimed at transforming our country and building an intergenerational, multiracial movement for women’s equity. By building up women’s collective power, SP will lift up an agenda that supports women’s needs.
UltraViolet: A powerful and rapidly growing community of people from all walks of life mobilized to fight sexism and expand women's rights.1.2M women strong, this group is building power by engaging our communities during high-energy moments to expose sexism and create lasting culture and policy change.
In advance, thank you for reading our story. We are still very much in the healing phase of things, but getting stronger every day. The amount of love, support and strength we’ve received from our tribe has been more than we could have ever expected to need and beyond generous. We are forever humbled, appreciative, and so so grateful.
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For another who may be going through a similar experience, first of all - I am so sorry. Second, I’ve come across this resource you might find helpful.