This post is part of our “Meet our Volunteers” series where we introduce you to a Sharing Parents volunteer, his or her story and baby(ies), and what they appreciate about volunteering.
Name: Sara
Baby’s Name: Max Seberger
Date of Birth: June 16, 2014
Volunteer Role: Navigating Grief Co-Coordinator; Subsequent Pregnancy Coordinator; March of Dimes Co-Coordinator; October Memorial Coordinator
We were standing in our master bathroom when saw the second line appear on the pregnancy test and we were overjoyed! After 8 months of trying, I was pregnant! Minutes later, I told my husband that we needed to give the baby a cool name in utero so we wouldn’t refer to it as “it” or just “the baby”. He smiled and said, “How about Maximus Prime?” I laughed at him, but agreed to call the baby “Max”.
Our anatomy scan was scheduled at 19 weeks and we had no reason to be worried. Everything had been fine up until then, a typical pregnancy. We didn’t want to know Max’s sex, so the ultrasound was uneventful. We got the first hint that something was wrong later that afternoon when the genetics department called. We were told it could be nothing, but one of the pictures showed that Max had an enlarged bladder and to come in for another ultrasound. We were told not to Google the condition in the meantime because it was probably nothing. After the ultrasound in the genetics department, we learned that Max had a condition called Posterior Urethral Valves (PUV) – a condition that affects one in every 8,000 male fetuses. We were told that 80% of the time the condition corrects itself, not to worry, and to come back in three weeks for another ultrasound. Max was a boy and he was sick.
We went back three weeks later at 22.5 weeks and the condition had worsened. PUV is a blockage in the urethra so Max wasn’t able to pee. This caused the fluids to back up in his bladder and kidneys and crowd out his other organs. The excess fluid in his body also meant there was not enough fluid around his body to allow him to move and develop properly. We were sent to a specialist in San Francisco who we hoped could perform some sort of fetal intervention to save our son. Unfortunately, he was already too sick. Max’s kidneys were riddled with cysts and his body was failing. It wasn’t a matter of if he would live, it was a matter of when he would die.
Between gut-wrenching sobs, we chose to terminate the pregnancy. It was the hardest and most emotional decision we had to make. We second-guessed ourselves when we’d feel Max kicking in my belly but ultimately we had to come to terms with the fact that we weren’t going to have a living, healthy baby. We knew terminating the pregnancy was the right decision for Max and for our family. We didn’t want him to experience any pain. I was induced a couple days later. Max was born still at 9:55pm on June 16, 2014. He was 1 pound, 11 ounces and 13 inches long. He was small, but perfect. My husband and I took turns holding Max. We were simultaneously heartbroken and awed by this beautiful boy we had created.
We chose to have Max’s body cremated and we buried some of his ashes in our backyard in a small memorial ceremony with just our parents. We planted an orange tree over his ashes and we go out to Max’s tree every night to tell him how much we love him, miss him, and wish he was here.
Both of my subsequent pregnancies were hard. I was anxious and did everything I could to stay distracted. The decision to try again was within my control, but everything after that wasn’t. I just had to hope that it would work out and that I’d have a baby at the end. Max now has two younger siblings – a brother born in October 2015 and a sister born in September 2017. Luka and Lina know about their older brother Max and he is very much still part of our lives. We talk about Max often and we get to share oranges from his tree as a family.
Sharing Parents was instrumental in facilitating my grief. My husband was supportive, but we grieved in such different ways that I felt alone. I thought that I was so broken and lost that I would never find my way back again. I wished I could trade places with Max. Being at Sharing Parents in a room surrounded by people who knew the pain I was feeling made me understand that I wasn’t alone and that I could come back from this grief to find a new normal for my life.
I started volunteering with Sharing Parents in the summer of 2016. I am so grateful for this space to be Max’s mom, to share our story, and to help provide support to parents who are going through one of life’s biggest heartbreaks. I see you, moms and dads. I feel your pain. I want to hear your baby’s story.
