On Being a Mama Through Loss and Trauma: An Interview with Marta Johnson-Ebels

By Martelle Esposito

What motivates you? And, why?

In general, what motivates me is to make improvements either in my life or in my community—that sort of thing. I think that applies to me as a parent as well. How can we have a better sleep schedule? How can we address a behavior that doesn’t seem quite right? How can we make things better?

What's does the transition from not being a mom to being a mom feel like?

I think my transition from not being a mom to being a mom was different than most because I had my son who passed away as an infant. So, there was this feeling of like, yeah, I have been a mom or I am a mom, but then there was a year and a half between that experience and then having my daughter. My onboarding to being a mom was also stressful in general. After the loss of my son, I had a miscarriage, and then I had my daughter, who ended up—we didn’t know it during the pregnancy—being born with congenital heart disease and some other medical issues. So, she was in the ICU for two and a half months and had six surgeries, one of them requiring life-long care. So, it was like loss, loss, trauma, and then getting used to a parenting routine that also included things like medical appointments. My daughter is starting preschool soon, and now our day to day is pretty normal. She’s extremely happy and resilient. MRI’s don’t even phase her. The biggest thing for her is, can I go play with kids? Normal kid stuff. So, we also had to adjust to figuring out what is something that needs medical attention vs. what is just being a normal kid.

Can you describe a time when you really felt your mom power?

It was during my daughter’s stay in the ICU. I had this feeling all day that something was different. Then she didn’t respond like she normally did, and I made it known that I thought there was something wrong. The medical team responded by taking her for imaging and found out that she had blood clots throughout her body. They told me that if I had not said anything and had not been insistent about looking into it, they would have never found this life-threatening problem. I was the only one who knew there was something wrong. It felt awesome that, yes, I know my kid. That was the first time I was like Booyah! I got this!

What advice do you have for other moms for unlocking their mom power?

Parents really do have this kind of inherent instinctual knowledge. So, I think the biggest thing is, don’t be afraid to voice your concerns, whether with medical providers or others. You know your kid.  

Can you describe an experience with health care where your expectations were not met or you felt disappointed?

I have been really disappointed in the process for the emergency room visits for threat of miscarriage, based on my own eight experiences across two pregnancies. The standard of care is usually just to confirm that either you have already miscarried or you are going to at some point. So, people talk to you like you are going through a miscarriage, and now you think you are going through a miscarriage, which is stressful. This is a problem because not all women with heavy bleeding have lost the baby or will lose the baby. I have a history of ER visits with heavy bleeding and no miscarriages. I had a lot of unnecessary stress in the ER.

Can you describe an experience with health care where you felt you were not treated the way you wanted to be treated?

I have mostly blocked out the worst experience, my first emergency room visit, because it was so bad. Since then, it still feels like they still aren’t fully considering the impact of their words on the patient. The clearest comments I remember from my most recent ER experience were, “we can’t do anything for this baby, if you lose it anyway.” I sat down with my actual OB the next day, and he said while it’s true that there is nothing that we can do if a miscarriage starts, there is a lot we can do to keep you calm and in your best position to have a healthy pregnancy. On another fairly recent emergency room visit, someone also said to me, you’ve been through this before, so you’re fine. Are you kidding?!

Can you describe an experience with health care where someone exceeded your expectations?

My current OB has experience with high risk pregnancies, and I feel like the practice has gone above and beyond, especially with my last pregnancy with my daughter. If you want an ultra sound every day, they’ll do it. They’ll do anything that will make you feel more reassured, no questions asked, no judgment. My stress level matters to them.

What would you tell other moms and dads experiencing infant loss and high risk pregnancies about moving forward?

While it was good for the first couple of weeks after I lost my son to share my pain in online mom groups, there’s a limit to what you can find on mom forums. They can quickly make you feel like you are in this bubble of hopelessness. Seeing a therapist helped me work through my pain, move beyond it, and open myself up to the future. Also, one of the best things I did to feel confident in any future pregnancies was go to the CSI of pregnancy loss, a physician who could explain why everything happened the way it did. For my particular situation, it gave me hope that I could have a healthy pregnancy. Finally, if a future pregnancy makes sense for you, find a provider who understands your experience. Providers who specialize in high risk pregnancies or who market themselves to take on high risk patients are more likely to know how to use their words and actions to make you feel supported.