Emma's story: Lurie Children’s never gave up on my daughter

By Julie Vanderpoel
If you saw my daughter Emma and her twin sister Olivia playing in the park, you would never guess the uncertain start Emma had in life. She faced numerous challenges as a newborn, and might not be with us today if not for the expertise of the cardiologists, neonatologists, surgeons and nurses at Ann & Robert H. Lurie Children’s Hospital of Chicago.
When I was 24 weeks pregnant with the twins, Emma was diagnosed with fluid in her lung cavity, a serious condition that could impair their function. The fluid then spread to surround her heart. As if that weren’t enough, my husband Michael and I were told that Emma also had a congenital heart defect, and would need surgery shortly after birth – that is, if she survived that long.
Six weeks later we consulted with a cardiologist at Lurie Children’s, who explained that once Emma was transported from Prentice Women’s Hospital, a team would be waiting to assess her condition and perform surgery on repair her heart. We had a lot of information to process, but it was a big comfort to know there was a plan in place for when Emma and Olivia entered the world.
By 34 weeks, fluid had spread to Emma’s stomach. The twins would need to be born immediately. Just hours after birth, Emma was rushed to Lurie Children’s, while Olivia and I remained at Prentice. I was only able to see Emma for a few minutes, and wouldn’t see her again until I was discharged four days later.
Although Emma’s surgery was a success, she continued to face challenges. On Thanksgiving Day, when she was two and a half months old, Emma stopped breathing on the way to have an emergency CT scan, and was placed on a respirator.
After looking at Emma’s scan, her care team thought she might also have a lymphatic disorder that was always fatal. When we asked if there was any hope for her, Emma’s doctor said, “Medically there is none, but we like to believe there is always some hope.”
The next day Emma underwent a lung biopsy, during which surgeons also removed some fibrous material from her lung cavity. I sat at her bedside in the NICU, unable to hold her because of all the tubes she was connected to. Our goal was for her to come home before Christmas and receive palliative care.
We hoped to have one holiday together as a complete family.
Five days later, I walked into Emma’s room to find her doctors smiling. The test results had ruled out lymphatic disease! Emma continued to improve, and, after 120 days at Lurie Children’s, she finally came home, where she was reunited with Olivia and met her two big brothers, Matthew and Jamie, for the first time.
Now age 3, Emma continues to thrive, and she and Olivia are beginning preschool.
We are forever grateful for Emma’s medical team at Lurie Children’s, who used their experience and expertise to evaluate every possible treatment. We also are grateful to the nurses who cared for Emma and us, celebrating the good days and comforting us in the darkest moments. Most importantly, we are grateful that no one at the hospital ever gave up on Emma. 
On September 5, the Vanderpoel family will share their story during the Eric & Kathy Radiothon to benefit Lurie Children’s on 101.9fm The MIX. The family’s Emma’s Entourage team also gives back to the hospital by participating in the annual Move for the Kids 5K Walk/Run, wearing pink tutus. They also donate handmade blankets and baby board books to the NICU. Find out about the variety of ways you can partner with Lurie Children’s to improve the health of children.