In 2017, Sarah Anderson found herself on bedrest 4 hours from home for the better part of 4 months. As a patient of the Midwest Fetal Care Center, she was looking to connect with other parents online who were going through a complex pregnancy.
“I’m from North Dakota and didn’t know anyone in the Twin Cities. While on bedrest in the Cities, I needed to find my own community of those who ‘got me’ and what I was going through, so I created this group,” Sarah said. “It’s been amazing to find other families so supportive of each other. While I was on bedrest, I met three moms who had fetal surgery before me, and it helped me feel like everything was going to be OK.”
From an online group to annual reunion
After connecting through a Facebook group, some of the moms decided to meet at the 2018 Walk for Amazing event put on by Children’s Minnesota.
They wanted to expand the support group and the idea of a Spina Bifida reunion was born. The following October, several moms really wanted to help new moms who were going to have fetal surgery and let them know that they aren’t alone. In October 2018, they held their first reunion in St. Paul.
“We wanted to show moms undergoing fetal surgery that they were not alone, so we decided to make ‘bedrest bags.’ Each family contributed something small—from socks to adult coloring books to knitting supplies—to help make bedrest a little easier,” said Sarah. “We also included a note to let them know they’re not alone, and they have someone thinking about them.”
Building bedrest bags has become a part of the reunion weekend, and the bags are shared with the care coordinators at the Midwest Fetal Care Center.
In 2019, the group added a Friday night mom’s night out. Moms meet at a restaurant to just talk about anything and everything. On Saturday, the families met at a park, connecting with each other and their care providers.
“Connecting and growing with a group of families that have managed similar struggles is really important. I think just as important is seeing the doctors that performed the surgeries that truly changed our children’s lives. I know I couldn’t be more thankful for the opportunity to say that every year to those that made it happen,” said Kaycie Peck one of the event organizers. “It’s always a bonus when your child can show off to the providers, care coordinators, nurses all the new developments they’ve made because of the providers’ work.”
On Sunday—the final day of the reunion—the group serves breakfast at the Ronald McDonald House. Since most of the families benefited from the amazing care of the Ronald McDonald house, they feel strongly about giving back.
Despite the pandemic, families connected virtually
The first two years of reunions were dedicated to the Spina Bifida families that received both prenatal and postnatal care through the Midwest Fetal Care Center and Children’s Minnesota. In 2020, the group expanded to include all Midwest Fetal Care Center families.
The virtual reunion, held on August 8, was a day-long online event where patient families posted photos and videos of their children. Nurses, providers and care coordinators also posted photos and videos. The organizers put together a fun coloring page with a prize drawing. They even had kids blowing bubbles and dancing and an opportunity for a live chat.
“For being a virtual reunion, it was pretty successful!” said Kaycie. “We had lots of video posts from a fair number of the providers and had beautiful updates on families throughout the day. It was really exciting to see the families outside the Spina Bifida crew and to hear their stories. It’s amazing to get a chance to really see what our amazing providers do for so many people.”
Looking toward 2021 and beyond
Sarah and Kaycie are hoping to see the group in-person in 2021. They also continue to plan ways to expand the group so that any family with a fetal diagnosis can find other parents who understand what they’re going through. As always, one of their top goals will be to show off their child’s development to their care team.
Sign up for the 2021 reunion can be found at: https://forms.gle/oTc5mhtGcWZ69AbaA.
To learn more about the Midwest Fetal Care Center, go to https://www.childrensmn.org/services/care-specialties-departments/fetal-medicine/.