Pregnancy & Birth

Perinatal Depression :: Susan Aguayo of Kassy’s Kause Interview

August 7, 2024

Susan and I met a few years ago at a Women’s Conference in Albuquerque. She shared her and her daughter’s story and her beautiful mission. I had never before heard of perinatal depression, so it was very eye opening. She uses her life experiences through motherhood, loss, and grief to help others. I’m thankful to share her story with ABQ Mom and beyond.

Our Interview

Hello Susan. Thank you so much for taking time to share your story.

Family

To begin, can you tell me a little about yourself, your background, and your family?

I was born in Peru and raised in New York from age five. I’m the oldest of three and always wanted to have a large family. I have an Early Childhood Education background, studied business communication, and studied to become a community health worker and doula. I married my high school friend, and I say “friend” because he was not my high school sweetheart. We went to high school and college together, and a short time after, we connected, married, and started our family right away. He came from a very large family, which I loved.

In 2004, we moved from NY after my husband retired early from the NYPD after he was hurt during 9/11. We looked at the map and took a leap of faith with four children and relocated to Rio Rancho, NM. He and I always talked about adopting and were blessed to adopt three babies who happened to be siblings. They are now all teenagers. We got our large family–seven children! In 2022, we took another leap of faith and moved to the beautiful island of Puerto Rico.

Kassy’s Pregnancy & Symptoms

You are the founder of Kassy’s Kause which you began after your family personally experienced perinatal depression and lost your beautiful daughter while pregnant. Can you tell us anything you’d like to about her and what you experienced?

We were very blessed to watch our four older children finish schooling, find their other halves, and build families. With our third child, Kassandra, her pregnancy came as a surprise. Although we could say most pregnancies are surprises, it came with debilitating symptoms we were not aware of. Both she and her husband were still in college. She took that semester off to work full-time as he concentrated on finishing that semester, being a football player for the UNM Lobos, and graduating in mechanical engineering.

She was experiencing perinatal depression which most would pass off as just hormonal. Her symptoms were: not sleeping well, consistent vomiting (hyperemesis), consistent crying out of concern of not becoming a good mom (she felt unprepared because she had not finished her schooling as an occupational therapist), guilt that she was not feeling excited and connected about the pregnancy (as she had always dreamed of). And she started to become concerned about her own dark thoughts to the point of having depression and anxiety.

Unfortunately, most of these symptoms we came to find out about after one long night again coming back from the ER. She was told the “baby is okay” and to “go home, you will be fine.” She took her own life, feeling she was going crazy. Why couldn’t she feel like me, her sisters,’ and her friends’ pregnancies, and how she imagined it would be?

We found this information on her phone. The words that hit me hard were she felt she was going to be a burden to the family. Here, she journaled her feelings. I was numb to getting the news that she was gone. We had just spoken the day before and made plans. I went into survival mode knowing that the rest of my family needed me.

» » RECOMMENDED RESOURCE: Pregnancy & Postpartum Mental Health Resources in Albuquerque « «

Helping Others

It took about one year to finally allow myself to mourn. Kassy always dreamed of becoming a mom. She would say, “I want to be a mom like you,” but I would say, “You will be a better mom than me.” Family meant so much to her. She was always taking pictures to have memories to share in the future. She always was the first when it came to helping people. Once I learned about perinatal depression, how common it is, how it can lead to postpartum depression and worse if gone untreated, she guided me to helping others be educated on this maternal mental health disorder and breaking the stigma in her name, Kassy’s Kause. Her nickname was KK, which helped to get the idea for the organization’s name.

Non-Profit Organization: Kassy’s Kause

In a few sentences, can you summarize what Kassy’s Kause is? How and when did it start? And what is the main mission?

I founded Kassy’s Kause seven months after Kassy passed away in 2015. It has done the legwork and put together resources for moms to receive during and after their pregnancies. We have doulas, home visiting programs to maternal health therapists, and more. We have been able to partner up with other agencies and hospitals when patients are in need of particular services. After we receive referrals, we help them get the help they need. We currently have a virtual support group (twice a month for free), do presentations throughout the states, and hold three yearly events. We have our Maternal Mental Health Summit, our Car show, and our Gala. All our proceeds go back to expanding the services and education to help others.

Our mission is to break the silence of perinatal depression and bring awareness through educating others.

Was it easy to find the resources you needed to start Kassy’s Kause? Can you give a brief explanation about how someone might go about starting a non-profit organization?

I would look back and say, God put the right people in my path who knew or worked with non-profits like Marilyn Salzman, RIP, who was the President of NAMI at the time. As I mentioned, I was numb and just went with the flow to make things happen. First, be determined with a mission when you choose what your non-profit will be. You have to get an EIN at the secretary of state business services. Be cautious when picking your board of directors, create your by-laws, and the rest of the steps are guidelines you follow along. As for resources to start, you have to do a lot of networking to stop, listen, and share. I believe when there is a will, there is a way.

Perinatal Depression

Can you define perinatal depression and share any statistics or facts you feel are important to know?

Perinatal depression has similar symptoms to postpartum depression. You’ve been told after you had your baby that by the sixth week your body should have hormonally and physically adjusted back. But it doesn’t always happen with everyone. Some pregnancies can be so overwhelming that moms don’t understand how to handle the feelings, and if not educated, to know what they are feeling. It can get out of control.

Many don’t know that there is also postpartum anxiety, postpartum OCD, postpartum attachment disorder, and very dangerously, postpartum psychosis. Most importantly, moms need to know it’s not their fault and that 25% have been documented and not given the right assistance. My daughter fell through the cracks and was overlooked. Men can also experience paternal postpartum, but symptoms can be feeling replaced, jealousy, being overwhelmed with the responsibility, domestic violence, substance abuse, or feeling abandoned in the home.

Support

Can you share the ways in which you have been able to spread your message through Kassy’s Kause?

We have collaborated with other agencies, such as Postpartum Support International, Mommas Voices, 2020 mom/Policy Makers, MOM Congress, American Mothers, and NPA. With these agencies as well as others, we have presented at conferences. We even got to DC to reach out to our state representatives so they are aware of what is needed in our state and continue to share with our annual events. We share that no one is immune and that this is an overall family concern that should be treated with high importance.

What events do you host or participate in that help spread your message?

As said earlier, we hold a Summit with speakers sharing their experiences and outcomes, doctors sharing what services we have and what we are still lacking, and vendors with informative services, usually held in March or April. We hold a family car show. We provide bouncers, face painting, food trucks and give winners their trophies. My husband gave me a classic car as a gift, a 1955 Pontiac Chieftain in the colors of our organization, which is Kassy’s favorite color. Teal blue in her memory. Our car show brings families together for a fun and relaxing time, but also agencies and local businesses share their information or products. We always have the full support from our Rio Rancho Mayor. He comes around and says hello.

Can you share a couple of stories you have where your story has impacted others?

We have several testimonies on our website that share how we are making a difference. We had a mom call us stating she was having dark thoughts during her pregnancy. She was not in a good relationship and was further along in her pregnancy and wanted to terminate because she felt unfit. Also, she was scared that she would not connect with the baby. She felt no hope of raising this baby. We suggested services like therapy, a home visiting program, and an adoption agency. She was able to have a healthy baby and have it placed with a family so wanting a baby.

Another one that stands out is getting a call from a NICU nurse, a mom going home empty-handed, and she was feeling the baby was there because of her fault, that she was not fit to be a mom. We connected her with a therapist, specific support groups with PSI, and a lactation consultant and gave her hope to surround her with other moms who have or are in the same situation.

One presentation that made me feel so satisfied was at CYFD, discussing if we are evaluating moms correctly and giving them the correct services when they are under the light for some improper situation. They looked very interested in wanting to reevaluate their cases, and two social workers spoke to me afterward very emotionally touched. One just learned she had experienced perinatal depression and was never diagnosed but just struggled alone through it. She had no idea there was a name for it. The other one knew of a family member who was experiencing PPD but was not aware of how severe it can be if gone untreated beyond the six weeks of baby blues.

How can people support this cause? How can they contact you for more information?

Most important is to attend our events and share. You can email [email protected] or call or text 505.603.2988.

Kassy’s Legacy

How are you doing today? Grief is a life-long process, and I’m sure some times are harder than others. Are there other things besides Kassy’s Kause that have helped you in your journey after losing your daughter?

It has been a healing process to know that for every one mom or baby saved, I get fulfilled as if Kassy was still here. As for what has helped me during these hard times is faith. Knowing, as cliche as it might seem by the comment, “All happens for a reason.” I really do believe that. I might have had to experience a very painful tragedy, but in return not only so many more are here, but I have grown as a person to have developed my own self.

Once again, thank you so very much Susan for sharing all that you have. May your mission through your experience and Kassy’s Kause continue to grow and flourish in helping many more moms and babies. I’m thankful that you also shared your story on our New Mexico Momcast. There you share even more details of your story, Kassy’s Kause, finding support, and even some great advice about being a mom and some of your favorite things about NM! Thanks again!

Closing Testimonial

Fellow ABQ Mom Contributor, Taylor Farinelli, shared the following. I’d like to close with her wonderful tribute.

“I cheered with Kassy in high school. She was the most bubbly, brightest smile in the room and first to cheer anyone up. We shared many uncontrollable laughs during practice every day. After high school, we remained friends and talked often. We talked about her baby girl and how excited she was to be having a wedding celebration with all of her family and friends. I had her invitation hung up. Just a day or two before her passing, we were talking about all the details and how I’d be coming back to town to celebrate. To say I was shocked when I woke up to several “Are you okay?” texts and missed calls that morning from other friends would be an understatement.

You know, I’ve battled depression my whole life and several times came close to the point of taking my own life. After Kassy, anytime I felt that way, I felt her presence and snapped out of it. She has saved my life many times. I wish I could just hug her and laugh with her again to tell her how thankful I am for her saving me. Often, I think about her, cry over her loss, and daydream about what life would’ve been like as moms together.

I’m still close with Momma Sue. She’s been there with me through all of my life challenges. When I was diagnosed with cancer, Momma Sue was right there with a prayer army laying hands on me. When I got pregnant, she was right there with me praying over my pregnancy. After I had Leila, she was there to love on us. Even now when she comes back to town, she pops in for a quick hug.”

The opinions expressed in this post are those of the author. They do not necessarily reflect the official policy or position of ABQ Mom, its executive team, other contributors to the site, its sponsors or partners, or any organizations the aforementioned might be affiliated with.