Four North Carolina families share their journey in experiencing Twin-to-Twin Transfusion Syndrome, a rare condition that can result in fetal loss. Read their stories of hope, fears, and overwhelming gratitude for expert care at UNC Hospitals.
Excitement. Disbelief. Panic.
It’s a mixed bag of emotions when finding out you are pregnant with twins. Many thoughts can overwhelm the mind, especially handling the logistics of twin parenthood and possibly a high-risk pregnancy.
Many complications can occur with a twin pregnancy like premature birth, low birth weight, preeclampsia or gestational diabetes. There are also rare cases of Twin-to-Twin Transfusion Syndrome or (TTTS).
TTTS is a prenatal condition in which twins share unequal amounts of the placenta’s blood supply. This results in the two fetuses growing at different rates, a high-risk condition that comes with serious complications and even death if left untreated. Identical twins count for a third of all twin pregnancies. About two-thirds of identical twins share one placenta, also known as, monochorionic twin pregnancy. Of those, 10-15% will go on to develop TTTS. There are also different stages of the disease depending on severity ranging from a decline in amniotic fluid between both babies, small bladder imaging, kidney failure, progressive heart failure to the fetus passing.
With its advanced diagnostics and surgical and medical treatments, the Maternal Fetal Medicine unit in the UNC Department of Obstetrics and Gynecology at the UNC School of Medicine is the only institution in the state and in the Southeast to offer procedures to treat TTTS. William Goodnight, MD, associate professor of Maternal Fetal Medicine, says his team completes about 20 TTTS cases a year.
These are the narratives of four families who received care at UNC Hospitals for TTTS. They share their heartfelt testimonies of challenges, perseverance, and gratitude on extraordinary healthcare to bring their babies home.
Facing Uncertainty. The VanFleet Family.
Fayetteville resident Laura VanFleet and her husband were overjoyed when they found out she was pregnant with twins in May 2023. She was six weeks pregnant. A sneak peek test revealed that she was expecting identical boys. They were also “mono-di” twins, also known as monochorionic diamniotic twins, meaning they share a placenta but have separate amniotic sacs. As the days progressed, Laura and her husband took steps to prepare for welcoming two babies into their home along with their toddler daughter. But, at 16 weeks, Laura’s pregnancy journey took a different turn. The twins were diagnosed with Twin-to-Twin Transfusion Syndrome – Stage 2. Living in Cameron, N.C., at the time, Laura was referred to UNC Maternal Fetal Medicine by her OB for highly specialized fetal care.
“I had zero symptoms that could have alluded to TTTS,” said Laura. “It was at a regular routine check-up when my doctor at Southern Pines Women’s Health was concerned about the amount of fluid discrepancies between the boys, and that’s when they referred me to UNC Maternal Fetal Medicine. At 17 weeks, I met with Dr. Goodnight and his team, who also confirmed the diagnosis. We were told of all the options and risks. I was recommended to have laser ablation surgery to save my boys.”
Fetoscopic laser photocoagulation is the gold standard treatment for TTTS. It’s a medical procedure to stop the uneven blood flow and separate the circulation between the two babies. The goal of the procedure is to use laser energy to block or seal off only the communicating vessels connecting the two babies so that they no longer share blood. Fetal loss, premature rupture of membranes, and preterm labor are just some of the risks associated with the surgery. However, research shows that this surgery is now considered as the first choice of treatment in TTTS with stage 2–4 before 26 weeks due to its better outcomes.
“For stage two or more of TTTS with no treatment is about a 30% survival,” said Goodnight. “The survival with the laser procedure is 75-80%. Every pregnancy is different. It’s important for providers to understand the complications of TTTS; early screening gives us better chances of success.”
“My husband and I had doubts that we were going to lose our babies,” said Laura. We were aware of the risks involved and we had to make a decision quickly. There were discussions about going out of state to receive care, but I knew I wanted to stay and face this surgery with the UNC provider team at my side,” she said.
“Delivery is an option if the patient is later in pregnancy or amnio-reduction by removing the extra amniotic fluid,” said Goodnight. “It’s a temporary treatment that is not as successful as the laser procedure and is most preferred in the third trimester. Other treatment options can be considered depending on the patient’s condition and health of the babies.”
A multidisciplinary team is required for a comprehensive fetal center, and it is composed of reproductive geneticists, dedicated fetal care nurses, specialty neonatologists, the maternal fetal medicine research team, and NICU care. For TTTS, pediatric surgeons, genetics, fetal therapy nurses, and maternal fetal medicine are typically involved in laser cases. Laura knew she was in good hands.
“UNC is the best,” she said. “From food deliveries to cleaning services, every single person at UNC is exceptional. You can tell that the team puts 110% into everything that they do. I knew that getting top quality care at UNC was going to be the best way for a positive outcome after receiving this harrowing diagnosis.”
The laser procedure takes 30-45 minutes, and the patient might be able to return home the same day depending on their aftercare. Laura was monitored week by week after the success of her surgery. At 33 weeks, after being in pre-term labor, she delivered her boys on January 31, 2024. Logan was 4 pounds 6 ounces and Rowan was 5 pounds 14 ounces.
A Mother’s Intuition. The Howell Family.
It was an exciting yet overwhelming feeling for Irene in early March 2024 when she discovered she was pregnant with twins.
“I was teasing with the ultrasound tech and jokingly asked, “you only see one baby in there, right,” said Irene Howell, a Lumberton resident. “Two seconds later, I was made aware that I was actually pregnant with twins. I was so shocked. I could have fallen off the table,” she laughed.
It took a couple hours for Irene to digest her reality before she went home to tell her husband, Kevin. When she returned home, she got her camera ready and told him the news. She handed Kevin the picture of baby A and baby B. Twins weren’t on his radar of possibilities, but he was immediately shocked with excitement.
Being high-risk, Irene was referred to Cape Fear Valley Maternal Fetal Medicine and Fayetteville Woman’s Care. She was referred to MFM due to being high risk with her age, pregnancy with twins, and having gestational diabetes in her previous pregnancy. The following month she found out she was having identical boys who were also “mono-di” twins. All scans and ultrasounds were going well, but in the month of July, things started to change. Irene started to feel less movement with her babies.
“I felt super swollen and uncomfortable,” said Irene. “I also wasn’t feeling my babies move as much. I thought I was being paranoid, but I started to question if everything was OK.”
During a routine ultrasound appointment in July, Irene’s OB noticed one of the twins had a smaller bladder and he wanted to check with her maternal fetal medicine doctor for further examinations at her next appointment, which was in three days. The early stages of TTTS are when a donor twin’s blood volume is lessened, causing the bladder to become small and amniotic fluid to reduce. That night, Irene started to research the red flags she was experiencing and more details about TTTS.
“I kept battling in my mind whether or not I should trust my gut feeling that something was wrong,” said Irene. “I made the decision to call my MFM doctor the next day to get another ultrasound done. I needed that peace of mind.”
She was scheduled to get an echocardiogram done on the boys the following day, but she wanted to be seen by her maternal fetal medicine doctor first just to make sure the boys were OK.
Irene was right. After another ultrasound was done, her twin boys did, in fact, have TTTS.
“I remember the ultrasound tech went to speak to my doctor and he returned to tell me the news. I burst into tears once it was official,” she said. “Literally 12 days ago I got their anatomy scan done and had great readings and then, at 22-weeks pregnant, I was looking at Stage 4 – Twin-Twin Transfusion Syndrome. My doctor debated if I needed to be transferred to UNC-Chapel Hill by ambulance or if it was safe enough to have my husband drive me up. At this point I knew when I got to UNC it wouldn’t be just a night stay, so we drove ourselves.”
Stage4 of the diagnosis includes advanced disease, growth restriction, and heart failure, which one of the twins was already showing. Irene’s doctor knew UNC was the experienced center in the state to perform TTTS laser surgery.
“I went home and packed a bag, my husband and I had to make preparations for a friend to take care of our daughter as we traveled to Chapel Hill,” said Irene. “It was an agonizing ride as I thought about the lives of my boys.”
Dr. Goodnight confirmed the stage 4 diagnosis and shared all the possible options for Irene and her husband to consider.
“When we were informed the perinatal survival rates were reported to be 45-68% following the laser procedure with at least one fetus surviving in 75-80%, it seemed that the laser procedure was our best option to try and save both boys,” said Irene.
The procedure was scheduled for the following morning. After an intense operation, Irene had a week-long stay at the hospital. Positive results slowly started to show fluid levels resolving to normal range.
“After being discharged, I continued my care in Chapel Hill weekly,” said Irene. “I began to feel better, and I actually lost weight due to the fluid being reduced. Had I not listened to my intuition and scheduled another appointment to be seen that Tuesday instead of waiting for my scheduled appointment for that Thursday back in July, I might would have lost both babies. It still gives me chills to think how different our lives could have been had I just waited two more days,” she said tearfully.
In August, Irene’s water broke. At 27 weeks and 6 days on August 19, 2024, Dawson and Phoenix were born weighing 2 pounds 6 ounces each. Phoenix spent 96 days in the NICU and Dawson spent 103 days. They both continued to gain strength and weight.
“I think about Dr. Goodnight and his team every day,” said Irene. “I am so thankful. I truly know our journey with the boys and TTTS would not have turned out to be what it is now without the hands of God, Dr. Goodnight and his team. These babies are miracle babies because of that phenomenal team!”
Twin Soldiers in the Womb. The Mendez Family.
Tatiana Mendez and her husband Christian were stationed at Fort Bragg U.S. Army base in Fayetteville, N. C., when she found out she was pregnant in June 2024. While Christian was on active duty at the time, her maternity care began at Womack Army Medical Center. During her first ultrasound at 10 weeks, she saw not one but two little heartbeats on the ultrasound.
“I was telling my sister-in-law that I was going to prank my husband and tell him we were having twins,” Tatiana giggled. “Little did I know, that was going to be true! God had other plans,” she laughed.
The couple has a 3 ½ year old daughter, and more pink was on the way after she was told she was expecting twin girls. It was an exciting moment for the entire family, but Tatiana didn’t know a long and arduous journey was ahead. She was considered high-risk for carrying “mono-di” twins, so her ultrasound appointments were every two weeks. As time progressed, her symptoms worsened, especially tightness in her stomach and her mobility was compromised.
“The tightness in my belly made it really hard to walk,” said Tatiana. “I couldn’t do any activities,”
At her 24-week ultrasound appointment in the month of October, Tatiana was told that her babies were diagnosed with Twin-Twin Transfusion Syndrome – Stage 2. She was warned that this type of condition could cause her to lose one or both of her babies. UNC Maternal Fetal Medicine was immediately contacted for Tatiana and Christian to schedule an appointment. Promptly the next day Tatiana and Christian were in Chapel Hill to discuss next steps. Dr. Goodnight and his team stressed the critical nature of the TTTS diagnosis and affirmed their decision to act fast.
“We are a military family, so we move a lot,” said Tatiana. “I am so thankful that we were in a location where we had this accessibility at UNC. My husband was supposed to have been deployed during this time, but his command allowed him to be by my side throughout this tough process.”
The following day, Tatiana’s surgery was scheduled. A normal healthy twin pregnancy has about 500-750 milliliters of amniotic fluid, but for Tatiana it was double that amount.
“1,760 milliliters of amniotic fluid was retrieved during my surgery,” she said. “A huge amount of fluid twin A was giving to twin B.”
Thankfully, the surgery was a success and amniotic fluids for both babies returned to normal range overtime. Tatiana was in recovery for three days and continued her care through UNC with routine ultrasounds.
“Honestly, I had instant relief,” Tatiana said. “There was less pressure in my belly, which made me feel so much better.”
In late December on Christmas Eve, Tatiana delivered her girls at 33 weeks. Isabella weighed 4 pounds 7.3 ounces and Gabriella weighed 4 pounds 12.2 ounces.
“Dr. Goodnight was phenomenal and so was his staff,” said Tatiana. “This was a life-saving intervention and I’m thankful that my girls are alive today. It’s super important for families to know that they are in good hands with Dr. Goodnight and his team at UNC.”
Access to Expert Care in Home State. The Gerber Family.
In June 2024, Brooklyn Gerber and her husband, Bryan, discovered they were expecting. While living in Greenville, North Carolina, the couple was excited at the thought of having another child; however, Brooklyn knew the symptoms for this pregnancy were different.
“This was my third pregnancy. We have two older kids: a 4-year-old girl and a 6-year-old boy. I felt more fatigued, and the nausea was terrible compared to my other two pregnancies.” At seven weeks pregnant, the Gerber family found out they were expecting “mono-di” twins. At this time, Brooklyn and her husband began to learn about the possible risks with a “mono-di” twin pregnancy, including Twin-to-Twin Transfusion Syndrome.
“I went to my primary OB for ultrasounds every two weeks for twin-twin surveillance,” said Brooklyn. “Everything looked great between the amniotic fluid in their sacs as well as their growth until I went in September at 17 weeks for my anatomy ultrasound. That’s when the first sign appeared of Twin-Twin Transfusion Syndrome – Stage 2. There was a big discrepancy in the amniotic fluid levels in the two sacs as well as a size discrepancy between the babies,” she said.
Concern instantly crept into their minds once the diagnosis was confirmed. Time was of the essence. ECU Maternal Fetal Medicine quickly contacted UNC to schedule a consultation with Dr. Goodnight. Following a thorough prenatal ultrasound, reviewing imaging, and discussions of treatment options and their inherent risks, the Gerber’s moved forward with scheduling fetoscopic laser surgery at UNC Hospitals.
“It was truly a stressful time,” said Bryan. “There are only a handful of centers in the country who perform this type of procedure, and UNC was one of them.”
“It was huge for us to be able to travel only two hours away from home and be gone only a couple of days for the surgery,” said Brooklyn. “Also, to be able to travel back for follow-up care for a couple of weeks without having to go too far from home was incredible. We were thrilled to receive this kind of care in our home state.”
After laser surgery, Brooklyn’s pregnancy began to return back to normal. Thoughts of risks and complications were still unsettling in her mind; however, neither she nor her husband gave up hope for their boys. Brooklyn’s original due date was February 21, 2025, but on January 16, 2025, at almost 35 weeks, she delivered her boys at ECU Health. Bennett was 6 pounds 5 ounces and Banks was 6 pounds. After an almost two-week NICU stay, both boys are now at home and thriving with their big brother and sister.
“I would definitely recommend UNC Maternal Fetal Medicine to anyone else in the area going through the same circumstance,” said Brooklyn. “I think it’s fabulous that people can have access to this procedure locally and not have to travel across the country if they need this done. We are very thankful and so fortunate!”
Written by: Brittany Phillips, communications specialist, UNC Health | UNC School of Medicine
