A Little More Hope Than Fear: Looking Back on Fetal Surgery for Emmie & Gracie
Annie and Joey watch their twin girls, just over a year old, climbing on the playground with no fear of heights. They take after their mom’s daredevil nature. However, Annie experienced a very different adrenaline rush early on in her pregnancy with the twins.
Annie received the news at her routine 16-week ultrasound appointment that both babies were behind in growth, but the diagnosis was uncertain. Immediately, she and Joey were referred to The Chicago Institute for Fetal Health at Lurie Children’s for further scans and evaluation.
“We were shocked, scared and running on adrenaline desperate to see the right doctors,” Annie recalls. “Luckily, CIFH was the perfect place for us to be.”
During their first appointment, the couple received an official diagnosis of Twin to Twin Transfusion Syndrome (TTTS). TTTS occurs when the complex blood flow from the placenta, which the twins are sharing, has abnormal connections, resulting in an imbalance in blood flow. This imbalance can result in poor growth, heart failure, and a risk for loss of one or both fetuses in utero.
Dr. Aimen Shaaban, director and fetal surgeon at The Chicago Institute, gathered Annie, Joey and a multidisciplinary team of doctors together to review the diagnosis and treatment options.
“Dr. Shaaban first gave us an opportunity to speak and explain what we already understood about the situation,” Annie explains, “it forced us to be present and not just zone out due to overwhelming fear.”
Being actively part of the meeting helped Annie and Joey absorb information and feel empowered to make smart decisions for their family. They appreciated Dr. Shaaban’s calm demeanor and use of analogies. He compared the placenta to a football field that needed to be shared equally by the twins, but the condition was showing twin A getting 90 yards twin B only getting 10 yards. This put the dire need for intervention into perspective.
Dr. Shaaban was determined to figure out a way to do the procedure that would give both babies the highest chance at survival. Annie and Joey were prepared for the worst-case scenario, but they worked with the multidisciplinary team of specialists and the nurses to make a confident decision about moving forward with surgery. Tricia Beelman, nurse coordinator, played a significant role. James Velez, administrative assistant, provided comfort and made scheduling easy during the emotional time.
During surgery, Dr. Shaaban took photos of the twins to share with the parents, which brought them to tears. The thoughtfulness of the staff from the initial phone call, all the way through the process, made them feel prioritized, seen and heard.
The couple was warned to be cautiously optimistic, as the pregnancy was only 16 weeks along. But hope was still on the table at the next appointment: they heard two heartbeats.
Annie spent a month in the hospital after her water started to leak at 25 weeks. She remained pregnant as long as possible, but an infection warranted delivery at 30 weeks. Emmie and Gracie were successfully delivered and spent 62 days in the NICU.
Today, Emmie and Gracie are living life to the fullest. They return to Lurie Children’s to visit the Early Childhood Development Clinic, but they are exceeding all expectations. The twins are equally strong, healthy, and smiley. While they are not quite able to talk yet, they have learned to roar like dinosaurs playing with their 3-year-old brother TJ, who they adore.
Annie and Joey reflect on the experience with full hearts. They are thankful to the team at The Chicago Institute, Prentice Women’s Hospital, and Lurie Children’s for the care and support that changed their lives. They also reflect on the roller coaster of emotions. From being scared beyond belief to seeing Emmie and Gracie thriving and loving life, they are grateful that hope was always present.
“Above all, have a little more hope than fear,” Annie and Joey say.
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