October is Pregnancy and Infant Loss Awareness Month. We sat down with local mom, Michelle Sauer, to talk about her deeply personal experience with infant loss. Michelle was open, she was honest, and she is sharing her story with our community. We can’t thank her enough for spending time with us in this way; we know her courage and strength will help so many other moms who are struggling. Read below and share widely.
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Please share your children’s names and ages.
The late, but always great “E.J” (Edward Joseph, would be 8), Evy (7), and Gracie (6)
Where do you live?
Cedarburg, WI
Tell us about your experience with pregnancy and infant loss.
When I was 29, my husband and I were expecting our first child. At our 18 week ultrasound, doctors discovered that something “wasn’t quite right.” At first, they thought that our son had a cleft lip and palate–although it broke our hearts at the time, we soon realized that clefts are completely “workable” and treatable. Upon further investigation and countless ultrasounds, tests, fetal MRIs, (you name the test, I had it), we discovered much more of an issue. E.J. was born with an extremely rare midline facial cleft as well as two major brain defects. He was completely missing the part of his brain that connects the left and right hemispheres (agenesis of the corpus collosum) and, as a result, had enlarged ventricles in his brain (a condition known as colpocephaly). The real kicker is that E.J. did not die from any of the aforementioned afflictions. He passed away because somewhere along the way, his feeding tube (g-tube) punctured his duodenum (first part of the small intestine) and started a terrible infection that his little body just simply could not handle. It was a freak accident–a medical error that nobody could predict. It was heartbreaking and terrible and something I have grown to accept–and yes, this took time—lots of it—and tears. I know that E.J.’s team of docs were doing their best to help him thrive—I liked them all—this was just one of those things—a really, really, really terrible “accident.”
When did you try again to have another child?
After having E.J., I switched OBs and started seeing Dr. Renee Coulter. I love her! We had a lengthy discussion and she basically said that when I felt both mentally and physically ready, to just go for it. I really appreciated her compassion and assurance that “when my body was ready, it would happen.” I was pregnant 6 months after giving birth to E.J.
Weren’t you scared it could happen again?
A little bit, but after having every genetic test known to man, I knew that E.J.’s condition was spontaneous–in other words, it couldn’t be linked to anything in my husband’s genes or my genes. It was a “fluke” for lack of a better word. The odds of it happening again were highly unlikely. That being said, every ultrasound was like a panic attack waiting to happen, but we powered through:)
How did your experience with loss change your relationship with your spouse?
Well, we now share the gift of perspective which is actually pretty remarkable. Losing a child is one of the most horrific things anyone can endure (in my opinion, of course). Life can throw you for a loop sometimes–it can be unfair and tough. Now, because we went through this whole ordeal together, we feel like we can get through anything together. When challenges arise in our lives, families, at work, in the community, etc. we can actually tell ourselves, “Hey, it could be worse…” I choose to look at this as a blessing, not a curse. No point in sweating the small stuff.
How do you talk to your daughters about your first born?
My sister-in-laws created a scrapbook after our son’s funeral. In addition to signing a guest book, funeral attendees wrote messages on little notecards to our family—something E.J. taught them, an inspiring quote, words of love and encouragement, etc. After the service, my sister-in-laws blended the notecards with all the photos we took in the 15 days E.J. was alive and created a beautiful memory book. Every year on his birthday, we bring out the book and show our daughters. In addition, the book Wonder by R.J. Palacio has been a wonderful teaching tool. The character of Auggy is a lot like our son in terms of his physical abnormalities. As a family, we piggyback off the kindness movement sparked by Palacio’s novel and subsequent film. We link E.J. to the kindness movement and try to teach our daughters to be kind to all the E.J.’s of this world.
Mom to mom, really, how did you go on?
I cried a lot, but I also talked a lot. I’m a talker–I don’t bottle it in–I get “it all out.” My saving grace was one of my best friends, Suzanne. Lucky for me, she is a pediatric nurse practitioner–the premiere pediatric nurse practitioner:) She was my medical adviser and my therapist—we broke world records for cell phone minutes used! She would answer all of my questions and just listen. Sometimes, all you need is that one good friend to just listen, give advice, but also be a realist.
How did this experience affect your professional life?
I’ll be the first to admit that it totally changed my career goals. Instead of continuing to pursue my Masters degree in education, I chose to stay at home with my two daughters and immerse myself in their worlds. Not one for complacency, I am an active member of my girls’ elementary school PTO and am a frequent classroom volunteer. I have chaired a major school fundraiser and continue to support school events in the areas of strategic planning and execution. I love supporting my daughters’ school and teachers. It gives me a strong sense of community and allows me the opportunity to be back in a school setting.
Today, how do you get support from other moms or provide support to those that need it?
The part of family planning that no one seems to talk about enough is pregnancy and infant loss. I do my best to reach out to all of my friends who have suffered through a miscarriage or the loss of a child. The more women I talk to, the less alone I feel and hopefully, the less alone they feel. So many women have experienced their own losses on their journeys towards being moms and I’ve found that the connections I’ve made truly help with the healing process on both ends of the spectrum. If I’m able to share my experience and methods of coping with one mom and it helps her in some way, I am truly thankful that my son’s story was able to help another.
