Allison Doty was four months pregnant with twins when her doctors in Louisville referred her to our Fetal Care Center.
The babies had been diagnosed with twin-twin transfusion syndrome (TTTS). The family was advised to drive the 100 miles north to see experts in our Fetal Care Center for the possibility of selective fetal laser photocoagulation (SFLP) surgery.
The next day, Allison and her husband, Jon, found themselves consulting with staff and planning for the next-day surgery. Things were moving quickly but they felt comfortable in the new surroundings.
“I was thrilled they were able to get me in as quickly as they did. The team is amazing. They made us feel informed. They were overly gracious and deeply cared about us,” said Allison, recalling the first meeting.
“We said to each other, ‘This hospital is on a whole other level.’ ”
The planned SFLP – a minimally invasive procedure in which lasers are used to equal out the blood share of the feeding vessels – was needed. Due to the fluid discrepancy related to the TTTS, Piper had decreased blood flow and lower amniotic fluid, and Oaklynn had increased blood flow and increased amniotic fluid. As a result, Oaklynn’s heart was working extra hard, causing cardiac concerns.
After doctors decided to hold off on the initially planned surgery date due to poor visualization of the placenta related to bleeding, a second surgery was successful six days later.
According to Erinn Goetz, nurse coordinator with the Fetal Care Center, there are risks to any invasive procedure (bleeding, infection, etc.). With progressive TTTS, however, the risks become much greater for these pregnancies without proactive surgery.
“Within the span of my career, we have gone from essentially no treatments other than observation – and almost certain death of one or both babies – to having a good treatment option,” said Goetz. “What we do know for sure though, is that with progressive TTTS, the likelihood that one or both babies will pass away is much higher.”
Following the surgery, the family stayed in Cincinnati for two weeks before returning home to Louisville. After three months of doctor-ordered bed rest for Allison, daughters Oaklynn and Piper were born in late December at 31 weeks, four days. They spent seven weeks in NICU at Norton’s in Louisville.
“Nothing earth shattering,” said Allison “Just working on development, breathing, taking in nutrients without the NG tube. I know there are far worse. We feel so blessed by this.”
Thinking back on their experience at Cincinnati Children’s Fetal Care Center, Allison tries to explain it all.
“Really, it is hard to put into the right words how special your team is and how much they mean to us. They walked with us through a very scary time in our lives,” said Allison.
In particular, she recalls being comforted during the mapping process of surgery, when she could hear the nurses and staff commenting on how beautiful the babies looked while capturing their images.
“They were making oohs and ahhs and it makes my heart feel warm knowing they care about this stuff,” said Allison. “It matters to me and my husband that they truly care about what they do.”
According Goetz, the team is well aware that this is likely “one of the most terrifying times” of families' lives.
“We often have a short time to present information and act. I think that all of us are very aware of that and also feel the need to almost wrap our arms around our patients,” she said. “To try to decrease the fear and anxiety as best as we can. As well as ensure that they are educated enough to feel secure in their decision to proceed with the procedure or not.”
After making a small incision in the mother’s abdomen, surgeons insert a small metal tube into the uterus. A fetoscope is passed through the metal tube so the surgeon can see the blood vessel connections on the surface of the placenta shared by the twins.
The laser is then used to seal shut the abnormal vessel connections, disconnecting them permanently. Excess amniotic fluid is then drained through the originally placed metal tube.
From the support staff to the team of doctors, everyone was amazing, added Allison. The twins’ care team included: Foong-Yen Lim, MD, the surgical director for the Fetal Care Center, as well as Jose L. Peiro, MD, PhD, the endoscopic fetal surgery director, and Mounira A. Habli, MD, a maternal-fetal medicine specialist also with the Fetal Care Center who the family saw almost every day.
“Jon and I felt confident knowing we had the best possible team performing our surgeries for the best possible outcome,” said Allison.
Each member of the team brings something different to the table, notes Goetz.
“But the one thing I think that we all share is a passion for what we do. We truly look at each patient as an individual,” she said. “We want to ensure that our patients get all of their questions answered and feel secure in their decisions about the care of their baby.”
As a parent, Allison felt very secure. Habli, for instance, visited the family almost every day, she said, and throughout the process all of their questions and concerns were addressed.
“She was rooting for these babies. She has a very motherly feel to her,” said Allison. “And Dr. Lim took his time to explain all of the risks and inform us of the hard reality of this surgery and the situation.”
As part of the follow-up visits, repeat echocardiograms and ultrasounds were done five days post-op to make sure things were stabilized. After Allison was released to her maternal-fetal medicine physician, ultrasounds were performed weekly up until delivery.
This was done “to make sure [amniotic] fluid levels were normal and blood flow studies were normal,” according to Emmie Meyer, Fetal Care Center Program Coordinator.
Now 4 months old, both Oaklynn and Piper are doing well. In fact, during Oaklynn’s most recent heart scan, the cardiologist said everything looked normal, so much so that if she didn’t already know the patient’s history, the scan wouldn’t be needed.
“That was great to hear,” said Allison. “The entire [Cincinnati Children’s] team is extremely skilled and knowledgeable and passionate about what they do. It is because of this that we got to meet these sweet babies this side of heaven and we are forever grateful for this blessing.”
(Published May 2021)