The Fetal Health Foundation is delighted to share this story TTTS triplet from our friends at the Cincinnati Children’s Fetal Care Center
Tiffini Fleck was pregnant with triplets when she and her husband, Richard, travelled from their home in northern Georgia to meet with experts at Cincinnati Children’s Fetal Care Center. Two of their babies had been diagnosed with a rare, serious condition that happens when identical twins share a placenta, known as Twin-Twin Transfusion Syndrome (TTTS). For treatment, the family decided to come to the Fetal Care Center for selective fetoscopic laser photocoagulation (SFLP), or laser surgery. It was successful. Now over a decade later, the grateful parents reflected recently on their time spent in Cincinnati during a recorded interview at the Fetal Care Center second TTTS reunion held in July 2023 at the Cincinnati Zoo and Botanical Garden, where more than 600 participants came to celebrate those affected by this rare and serious condition.
NOTE: The transcript has been edited slightly for clarity and additional comments inserted from follow-up discussions.
Tiffini (mom): We are the Fleck family. Eleven and a half years ago (in February) we were given three options. We knew that we [were going to have] triplets at the time and we were told that two of them had Twin-Twin Transfusion Syndrome. We could:
- Do nothing and hope for the best.
- Draw amniotic fluid (weekly or monthly). And again, hope for the best.
- Or we could fly to Tampa or Cincinnati for [selective fetoscopic laser photocoagulation] surgery.
It took us five seconds to decide we’ll fly to Cincinnati. [It was two-fold. First, I have family in St. Louis and felt more comfortable about heading in that direction. The other reason was Cincinnati Children’s great reputation.]
We came in February and it was snowy. We’d never been here before. It was kind of scary. Then we had the surgery. Cincinnati Children’s was just so welcoming. They made me feel really good. They gave us really great odds and just helped us feel hopeful, I think, that I would get to have at least two out of the three girls. We didn’t find out that Hannah was a girl until the 3-hour MRI. We knew the identical [twins] were girls before that.
After the surgery, the [care team] told us it was successful, and that the percentage was high that we would be bringing all three home. That was amazing. I will say it was really shocking to learn, when I woke up, that I had to be horizontal until they [were born]. I thought I would just go back to work. I was a teacher and so from February until June, when they were born, I was on bed rest.
But it’s worth every moment of insanity to bring these three into existence. We’re just really thankful for Cincinnati [Children’s] and for Dr. Lim (Foong-Yen Lim, MD, the surgical director of the Fetal Care Center).
This place [Cincinnati Children’s] just holds a special place in our hearts for us, as a family, because now I have 11-year-old triplets. And they are a blessing. We are truly grateful and thankful for Cincinnati [Children’s] and the Fetal Care Center and all the doctors and nurses that helped us through the whole thing. It was one of the scariest parts of our life, but it’s also one of the most amazing and memorable because it helped us have a successful pregnancy and bring all three babies home.
Richard (dad): I just remember while we were here that Dr. Lim and Dr. Habli (Mounira A. Habli, MD, medical director of Maternal-Fetal Medicine) were taking care of us. They informed us of what was going on and choices [of] what we could do. [They] walked us through the risks – [gave us] lots of information.
We had no idea what TTTS or Twin-Twin Transfusion Syndrome meant or what that was going to be like when we were first diagnosed. Our maternal-fetal specialist back in Atlanta had it on her radar and she knew what to do. [She] walked us through that whole process. She recommended Cincinnati [Children’s]. She told us about the other options, but said, “I’ve sent people there before. They’re awesome.” And, sure enough, it was a blessing to come. And like Tiffini said, the staff in the Fetal Care Center just took care of every need that we had while we were here. And just, you know, waited on us. It was sort of like a concierge, like a hotel almost.
Tiffini: It was like next-level amazing. That’s the standard I hold every hospital to now. They were just so nice and hopeful. You could tell they dealt with it day in and day out. There was no “gloom and doom.” I feel like their attitudes and the way they looked at things, that kind of helped us with our attitudes. Sophia and Isabella had [TTTS]. Sophia only has 30 percent of the placenta and Isabella has 70 percent. So, that’s pretty low and the success rate of her growing and doing what she’s doing was not that high. The surgery was successful. We still had to take precautions. But they still made us feel like it was completely possible to bring all three home.
Dr. Lim: Performing surgery on triplets is more complex than on twins. In Tiffini’s case, there were two placentas: Hannah had one placenta all to herself, while Sophia and Isabella were sharing the other placenta, albeit unequally. Sophia and Isabella were affected by TTTS when the volume of blood flow across the connecting blood vessels between them became uneven, with Isabella getting too much and Sophia getting too little.
The goal of surgery is to seal off these connecting blood vessels to restore the balance as well as to preserve as much placenta as possible to allow them to continue to grow after surgery, while not causing any problem to Hannah who was not affected by TTTS. Surgery was challenging technically since the shared placenta was at the front part of the uterus (a.k.a. anterior placentation) while Hannah was occupying the left side of the uterus. Fortunately, Dr. Habli and I were able to find a small but safe window using ultrasound for placement of a camera and laser into the womb through a small cut to complete the surgery successfully.
Richard: They found eight blood flow connections between the two. Tiffini said it felt like popcorn going off in her stomach.
Tiffini: I was awake; you’re awake during the surgery. It just felt like someone was setting off popcorn right inside when they were burning the laser. It’s just so amazing what they can and cannot do.
Dr. Lim: We are achieving continued improvement in the overall outcomes of TTTS [patients] due to advancements in making the diagnosis early, and improved medical and surgical management of this rare but severe condition. Recently, we are seeing survival of at least one twin being 96%, and overall survival [rate] of 89%. Our goal is to save as many babies as possible even if they have advanced disease, growth restriction, and already developed heart failure (Stage 4 TTTS or at least one of the twins with hydrops fetalis).
The survival outcome for Stage 4 TTTS is approaching that of less advanced disease (Stage 1, 2, and 3). We have managed more than 2,400 patients with TTTS, and had performed more than 1,500 surgeries. We are also one of the most experienced centers in performing laser surgery for triplets affected by TTTS. During surgery, some mothers reported feeling tiny amount of non-painful heat sensation inside of their womb when the connecting vessels were being sealed off using laser. Occasionally, faint popping sounds might be generated by the laser when some heat was emitted from the tissues next to the treated blood vessels.
Richard: When we got home, total bed rest. Really the only adventure was going to the doctor once a week. And then as we got closer, twice a week, three times a week. But we made it all the way to 34 weeks.
Tiffini: 34 ½ weeks. Our goal was 28. Only 10 days in the NICU [newborn intensive care unit] and then all three came home on the same day. I had a full-blown panic attack I asked the doctor if he was sure, “Are you sure all three of them get to come home with me?” He was like, “Yeah, they’re fine. They’re feeders and growers.” Sofia was still only four pounds, but we had a car seat rated at 4 pounds. So, he’s like, “They can all three go home tomorrow.” And I was like “OK we’re doing it. We’re jumping in.”
Richard: We split them up into two different cars, watching them the whole time. We were about an hour away from the delivery hospital.
Tiffini: I was so afraid they were going to stop breathing on the way home. You know because premature babies have to pass the car seat test. My sister sat in between the two that were in one car and I said “if their lips even pretend to turn blue, you say something! You pull this car over.” But it was amazing. We truly love Cincinnati [Children’s] and everything they did for us.
Richard: Really our faith, prayer and then the expertise of the Fetal Care Center… couldn’t have done it without them. So grateful for all that they did.
(Published November 2023)
Read more about TTTS:
Four Things to Consider When Dealing with the Uncertainty of TTTS
Understanding the Stages of a TTTS Diagnosis
