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I Found Community and Hope by Sharing My Pregnancy Journey

Stephanie Cartin is the co-founder of the digital agency Socialfly, co-host of the Entreprenista podcast and co-founder of Markid. After a harrowing experience during her first pregnancy, she has also become an advocate for pregnant women as a board member of Columbia’s Neonatal Comfort Care Program.

I always knew I wanted to be a mom, but one of my biggest fears in life was that I wouldn’t be able to get pregnant. That fear seemed unfounded until it became a reality when my husband and I started trying to have a baby. 

I was diagnosed with Multiple Sclerosis (MS) when I was 27. After doing additional genetic testing when we were ready and learning that I was a permutation carrier of Fragile X, we were referred to a reproductive endocrinologist who encouraged us to jump right into IVF. But the medications for IVF can cause complications with MS, so I insisted we try to get pregnant on our own first.   

We spent about a year trying without any real support. I was tracking my cycle, taking my temperature, and reading what I could online, but nothing happened. I felt like I had wasted an entire year. We went back to our reproductive endocrinologist, who sent me for an hysterosalpingogram (HSG) test that is a type of x-ray of the uterus. He gave me no warning about what the procedure would be like, and it was by far one of the most painful experiences I’ve ever had in my life. Afterwards, I wound up getting really sick from an infection.

Looking back at this time, I felt like I was on autopilot — listening to my doctor without trusting my instincts. The entire time I was going through this, something didn’t feel right, and I knew that this wasn’t the doctor for us, but I ignored my gut reaction. I was just so desperate to have a family that I kept telling myself “the doctors know best.”

At that point, I started sharing my infertility journey on social media, and my connections there quickly became the supportive community I relied on. Because I felt like I wasn’t getting the answers I needed from my doctors, I took my health into my own hands and became a detective investigating my medical case. Through the social media community I cultivated, I not only found a doctor who specializes in auto-immune issues in women trying to get pregnant, but I also found the answers I needed to treat the conditions I had, including endometriosis, silent endometriosis, MTHFR mutation, and more. After extensive testing, I was finally put on the proper protocol.

On October 24, 2018, we did our first embryo transfer. Just four days later, I had a feeling I was pregnant. Not only that, but I sensed the embryo had split. One blazing positive pregnancy test later, I sat in my reproductive endocrinologist’s office watching the technician perform a scan. I thought to myself, there are two of them. Our doctor confirmed it: we were pregnant with twins.  

The next day, in an important business meeting, I started gushing blood and feared I was miscarrying. None of my doctors had warned me that bleeding is common after IVF. I ran out of the meeting, right into a blizzard, calling my husband while I tried to hail a cab. It was like a scene out of a movie — the worst movie, ever. I finally got to my doctor and found out I had a hematoma, which was causing the bleeding. Two weeks later, I had another one. It wasn’t until weeks eleven to fourteen that I finally had no bleeding. Looking back, it was the only time during my entire pregnancy when I felt like I could actually breathe.

When we went in for our ultrasound at sixteen and a half weeks, my doctor wasn’t supposed to be there. So, I knew something was wrong when he walked into the room after my scan.

From the ultrasound, we learned I had a twin-to-twin transfusion and one of our baby's amniotic cords was attached in the wrong place. My babies were in two separate amniotic sacs sharing the same placenta, and their blood supply was being improperly shared. All of the blood and nutrients were going to one baby.

My doctor, my husband, and I sat down to discuss our options. I could have laser ablation surgery, which would be an attempt to save both babies. Or we could choose to terminate one baby in hopes of saving the other one. My doctor was ready to perform the procedure that day, but making such a significant decision that quickly seemed overwhelming to me because of the risks and permanence. 

Once again, I turned to my social media community and Facebook groups. I shared my story, and so many women who had been through the same thing reached out to me. Based on the research I did and the support from these groups, we decided to have the laser ablation surgery the following Monday.

The procedure happened in the same area of the hospital where C-sections are performed. I was awake and numbed from the waist down. As I lay there, about to endure a traumatic surgery to try and save my babies’ lives, I heard the cries of newborns close by. I kept repeating the same mantra over and over, “My babies will make it. Everything will be okay.”

I was in so much pain after the surgery, but there were still two heartbeats. The next morning, there was only one. We had lost our baby Emmy.

Then, they just sent us home. It felt like, “Okay, one of your babies died. Goodbye.” I don’t remember anyone asking me if I wanted to talk to a social worker, a therapist, anyone. I realized through this whole process that how doctors help parents make decisions and the support systems in place for these tough conversations needs to change. It has to be better.

We named our daughter Mollie, and I knew her twin sister, Emmy was going to protect her.

And Emmy did just that. The day after surgery I started leaking amniotic fluid, which turned out to be PPROM, a preterm premature rupture of my membranes. My online community shared a PPROM health regimen with me and my daily mantra became “every day pregnant is a good day.” I found out that PPROM is more common than anyone would think, and the only reason we know so much about it now is because of communities of women like mine who connected and shared their stories. In the past, when you ruptured, some doctors would opt for an immediate induction. But with support, women have been able to educate their doctors.

At the beginning of our fertility process, I felt paralyzed. I was afraid to speak up to my doctors, and I was scared to be my “Type-A Stephanie self” and share what I had learned from other moms on Facebook. I thought if I acted like I knew more than they did, they weren’t going to like me and they weren’t going to want to treat me.

But now I had the courage to advocate for myself. Every week, my doctor told me, “This doesn’t look good. You have no fluid. There’s just not a good chance she’s going to survive.” I would respond, “Well, I’m in this Facebook group, with tons of other women telling me that they had no fluid either and their babies survived.” He asked me to show him, and I shared story after story. My community in the PPROM group kept telling me, “If there is a heartbeat, there is hope.” 

At twenty-three and a half weeks, I was admitted to the Neonatal Comfort Care Program at Columbia, where I learned that if I could stay pregnant until at least 28 weeks, Mollie would have a great chance. So, I set my mind on that date. My hallmate during my 11-week stay was a woman I met through the PPROM Facebook group, Kaitlin. We had ruptured the same week, had the same due date, and encouraged each other the whole time.

I was induced at 33 weeks and 5 days on the night of May 29, and delivered Mollie Hope Cartin on May 30, 2019, at 5:44pm. I remember the moment the doctors placed her on my chest. As she lay there, everyone was telling me to talk to my baby. But the only thing I could do was repeat, “Just tell me she’s okay. Just tell me she’s okay.”

Many doctors kept telling me she was never going to survive, but she did. Mollie Hope had virtually no amniotic fluid for seventeen weeks, but she developed beautifully, and her lungs are in perfect shape. She is our little miracle baby.

Looking back, I knew I would not have gotten pregnant — or stayed pregnant — if it were not for the community I built and the support they gave me. I learned that you have to be your own best advocate, and you have to speak up. I am now on the advisory board of the Neonatal Comfort Care Program at Columbia, advocating for women every single day. I have realized that my life’s purpose is making sure other women have the same care, support, and education that I did, and to help those women realize they are not alone.

Kaitlin is still one of my closest friends. Her son and my Mollie went home from the NICU on the same day. Through it all, we did everything we could to fight for our babies. Because when everyone else said no, we said yes.

Know a womxn who’s powerful life or health story deserves a spotlight? Email us at knowledge@veracityselfcare.com.

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