Miranda and Isabelle’s Story: Twins’ Condition Takes a Last-Minute Turn

Roberta described pregnancy as a waiting game – always waiting for the next scan or waiting for the next week.

Roberta was pregnant with twins and around 20 weeks her ultrasound scans showed there was a different level of amniotic fluid around each baby. This difference in fluid levels is one of the symptoms of Twin-to-Twin Transfusion Syndrome (TTTS), a rare and complicated condition that can occur with identical twins who share one placenta. Abnormal blood vessel connections in the placenta result in an unequal blood flow between the two babies.

Roberta’s obstetrician recommended checking back in a week to see if the condition progressed. After an anxious week of waiting and wondering, the diagnosis of Stage I TTTS was confirmed, and Roberta was referred to The Chicago Institute for Fetal Health (CIFH) at Lurie Children’s.

“I was devastated. When you’re pregnant you worry about your babies, but this was even more alarming.”

Roberta’s first visit to CIFH was packed full of scans and tests. Although they were anxious, she and her husband, Hector, were also relieved to get some answers – and find a team that supported them.

“The team meetings can feel overwhelming. It’s a lot of people and it’s very serious. But it’s because they take it seriously, they truly want the best outcome for your baby,” Roberta said.

The director of CIFH, fetal surgeon Dr. Aimen Shaaban and his team helped Roberta feel empowered in her journey ahead. She felt comfortable asking as many questions as she wanted and was encouraged to learn everything she could. Back at home, she visited the institute’s website to read more about TTTS, and came upon a photo of Dr. Shaaban holding a healthy set of twins. This set of twins also had TTTS, so she clicked to read the story behind it. “That’s when I started to feel encouraged about my situation,” she said.

The CIFH team continued to monitor Roberta’s pregnancy. At 28 weeks, an ultrasound revealed an even greater difference in the fluid levels around each baby. The team met again with Roberta and Hector to explain these new findings and the options for TTTS treatment. After consultation with Dr. Shaaban and the team, the couple decided to have the surgical treatment for the TTTS, a procedure called Selective Fetoscopic Laser Photocoagulation (SFLP).

But then, during the pre-operation process, another ultrasound result changed the family’s course. Dr. Shaaban noticed that the fluid levels between the twins had evened out since the scan a few days prior. He informed Roberta that the fluid levels can change and now the surgery may not be necessary. He assured them that all the necessary teams were in place if they wanted to have the procedure and explained the option for watchful waiting.

“He left the decision to us on whether to move forward or not,” Roberta recounts. Dr. Shaaban explained the risks and benefits of each option. The twins, he said, were still in the earliest stage of TTTS and their organ development was on track.

The couple felt comfortable pausing the procedure.

“Every day we get to go home with our girls is a good day,” Hector told Roberta at the time.

The twins were monitored closely for the remainder of the pregnancy, but a few weeks after the canceled procedure, excruciating pain brought Roberta back to the hospital.

After an emergency room visit and a hospital admission, Roberta was sent to Northwestern Medicine Prentice Women’s Hospital, right next door to Lurie Children’s. It was determined that the pain was caused by a significant increase of fluid in an amniotic sac.

She underwent an amniocentesis to remove two liters of fluid from around one of the babies.

“As we were getting ready for the procedure, in walks one of the specialists who was at our team meeting [at CIFH]. It was a huge relief to see someone who knew our case and knew my story.”

Three days after the amniocentesis procedure, delivery was induced as the twins started to show a growth discrepancy. It was difficult to monitor the babies’ health during labor and the team agreed that a cesarean section would be the safest method of delivery. The twin girls arrived at 32 weeks, with a one-pound difference in their weight.

Isabelle and Miranda stayed in the Neonatal Intensive Care Unit (NICU) at Prentice for almost 40 days to monitor their growth and final stages of development.

Now nineteen months old, the girls are doing well. Miranda is on the move and loves to explore everything. Isabelle loves food and playing with her older brother, who is almost three. Although twins and a toddler are a busy bunch, Roberta is grateful for the outcome.

“Ultimately, it does end up being your own decision, what treatment you go with,” Roberta said. "Finding the best care is everything you can do for your babies.”

Learn more about The Chicago Institute for Fetal Health.

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