A Twin-to-Twin Transfusion Syndrome Journey: Navigating Hope, Loss, and Strength

Hello ASK Resource Families, Staff, and Fellow Advocates!
My name is Jade Ewoldt, and this is my family's story. My son, Koy, is 11, my oldest daughter, Kollins, is 9, and my identical twins, Keeley and Kambry, just turned 6. We live in Jesup, IA.

Our Journey with Twin-to-Twin Transfusion Syndrome (TTTS)

At 16 weeks pregnant, Keeley and Kambry were diagnosed with Stage 2 Twin-to-Twin Transfusion Syndrome. I was referred to the Cincinnati Fetal Care Center to determine if I was a candidate for a life-saving surgery. At that time, the twins were critically ill, with a 90% chance of passing away in utero. However, they did not yet meet the size discordance threshold for surgical intervention.

At 18 weeks, we returned, and the criteria had changed—surgery was now necessary to save them. Without it, their survival chances were only 10%. This procedure carried significant risks, including a high likelihood of preterm labor within 10 weeks.

After surgery, I was placed on modified bed rest in Iowa, only allowed to get up for essentials. Follow-up appointments showed the surgery had been successful, but at 22 weeks and 1 day, my water broke while I was home alone with Koy and Kollins. I insisted on being taken to the University of Iowa Hospital, knowing it was the best place for my babies’ survival.

The next day, Keeley and Kambry were born:

· Keeley – 1 lb, 11.5 inches

· Kambry – 13.4 oz, 11 inches

Despite their fragile state, they had what their medical team described as a "textbook recovery." Kambry was discharged after 5 months, and Keeley followed a week later. Both required 24/7 oxygen for two years.

Life Today: Growth, Challenges & Triumphs

Keeley and Kambry have faced ongoing medical challenges, including:

· Chronic Lung Disease & Severe Bronchopulmonary Dysplasia (BPD)

· Recurring illnesses 

· Seizure Disorders

· Autism (manifesting differently in each)

· Kambry: Intellectual disability, cerebral palsy, mostly nonverbal for her first two years

· Keeley: Strabismus and amblyopia due to Retinopathy of Prematurity (ROP)

Despite these diagnoses, nothing has defined or held them back.

Kambry has attended Balance Autism for three years. When she started at age 3.5, her comprehension was below a one-year-old's level. Today, testing shows her understanding is at a 5.5-year-old level—an incredible leap. Both girls are now in Transitional Kindergarten, loving school, making friends, and bringing home heartwarming notes from classmates.

We are currently in our third round of IEP evaluations, a long battle requiring time to prove learning deficits. While we’re not where I’d like to be yet, I’m relieved the school is now recognizing their needs and offering more support.

A Family of Resilient Advocates

Koy and Kollins have grown up alongside adversity, never seeing our "different" as different until recently. They absolutely adore their sisters and are their biggest cheerleaders.

As a family, we share our story wherever we feel called to do so. It’s my hope that by speaking out, we can help save more babies. It’s hard to see purpose in our struggles while we’re in them, but I believe that Keeley and Kambry’s fight to survive can help other families bring their babies home, too.

A Guinness World Record & A Lasting Impact

Keeley and Kambry broke a 25-year Guinness World Record for being the most premature twins ever born at 22 weeks and 1 day. They held this title for four years before a set of Canadian twins broke the record—by just one day! However, Keeley and Kambry still hold the U.S. record.

Our story continues to reach and inspire families. We hold the University of Iowa close to our hearts and do everything we can to support its ongoing mission. Connecting with other families and sharing our journey has been incredibly powerful.

Our Connection with ASK Resource Center

Through sharing our experience, we were connected to another ASK Resource Center family, which introduced us to ASK’s incredible support. Their guidance helped us advocate more effectively within our school district, strengthening our relationship with educators and ensuring better safety and academic plans.

I frequently share with new families just how valuable ASK Resource Center has been in giving me peace of mind—something I once thought I’d never find.

Let’s Stay Connected

I look forward to meeting more families this year! You can follow our journey at "Keeley & Kambry’s Tribe" on Facebook.