Carolyn Conant of Newtown, Connecticut, had a “textbook” first pregnancy three years ago with her daughter, Teagan. That is why she was so surprised to learn about the complications she and her husband, Barton, were about to experience with the expected birth of their twins, Barton and Mabel.
The Pregnancy
Although a twin pregnancy means double the excitement, it also means there is a higher risk of complications compared to a single pregnancy. One complication is the increased risk of premature birth. In the United States, about 60 percent of all twins are born prematurely (before 37 weeks gestation). As a result of this higher risk, a twin pregnancy requires more monitoring than a single pregnancy. Carolyn’s obstetrician/gynecologist referred her to Dimitry Zilberman, DO, a maternal/fetal medicine specialist at Danbury Hospital, to support her throughout her pregnancy.
When Carolyn was about 20 weeks pregnant, an ultrasound revealed that Mabel (Baby B at the time) had severe growth restriction. Severe growth restriction is a rare condition where a baby does not grow to a normal weight during pregnancy. The condition was most likely due to a placenta malfunction, but other factors can also lead to severe growth restriction.
As the weeks progressed, Barton (Baby A at the time) was on track with appropriate growth, while Mabel continued to fall further behind.
“This was a very complex case. The Conants and I had many discussions about different scenarios, and what was the best option for both babies. There was a possibility that we would have to deliver Baby B at 23 or 24 weeks to give her a chance to survive, although the odds of survival would be low. Also, the other healthy baby could have complications from being delivered too prematurely. There was also a possibility that we could wait until later in the pregnancy to deliver the babies, but then the weaker baby may not survive in utero,” explained Dr. Zilberman. “We decided to continue the pregnancy, with very close monitoring. Our goal was to make it to 28 weeks.”
Although being born at 28 weeks is still extremely preterm, Mabel would be at risk of stillbirth if they waited any longer to deliver.
We were almost certain that Mabel would have to be delivered early to give her a chance to survive. Dr. Zilberman gave us safe options for extending the pregnancy. We had complete confidence in him knowing how far we could push it and when Mabel had reached her limit, said Carolyn.
“We follow proven standards to deliver excellent, high-quality care, while also providing very personalized care, which was particularly evident in this unique case,” said Dr. Zilberman.
“Dr. Zilberman was fantastic throughout my pregnancy. We had to have difficult conversations about the babies, but his compassion, honesty, and dedication helped us through the experience,” said Carolyn.
Carolyn was an inpatient at Danbury Hospital the last week and a half before the babies were born. She was on continuous observation, with three monitors on her stomach — one for her, and one for each baby. During this time, Dr. Zilberman worked closely with Danbury Hospital’s neonatologists, Jeffrey Bartlett, DO, Director of Neonatology, Catherine Hansen, MD, and Morgan Spaight, MD. Drs. Bartlett, Hansen, and Spaight are neonatologists for the Western Connecticut Health Network (WCHN) and Connecticut Children’s Medical Center (Connecticut Children’s).
“That week and a half in the hospital was surreal. While I tried to stay positive, I knew that something bad could be coming. Sometimes I thought, ‘Is this the last day I’m going to be really happy?’ because I was never sure what the next day, and toward the end, what the next hour was going to bring,” recounted Carolyn. “I think because I had a rough pregnancy, I was more prepared for what was to come. I started to live life moment to moment.”
The Delivery
During their respective shifts, Drs. Zilberman, Bartlett, Hansen, and Spaight kept Carolyn informed each hour about whether or not they needed to deliver the babies.
Carolyn’s due date was March 3, 2018. On December 13, 2017, Barton Rohde and Mabel Rose Conant were born at 28 weeks. Barton weighed 2.5 pounds. Mabel was one of the smallest babies ever born at Danbury Hospital, weighing just 1.5 pounds. Newborns who weigh less than 3.25 pounds are considered very low birth weight (VLBW). Only about 1.08 percent of babies born in the United States each year are VLBW.
Yelena Paranyuk, MD, of Physicians for Women and Danbury Hospital, delivered the babies via Cesarean section. There were about 10 Danbury Hospital Family Birthing Center medical staff in the delivery room, including Dr. Bartlett and two nurses per baby. The hospital staff stabilized both babies quickly and brought them immediately to the Neonatal Intensive Care Unit (NICU). Danbury Hospital is one of only a few in the state of Connecticut that has a Level IIIB NICU. Neonatologists, neonatal nurses, and respiratory therapists are available 24 hours a day to care for very small or very sick newborn babies.
“I didn’t see the babies right away because they needed immediate medical attention. I knew they were alive and had 10 fingers and 10 toes, so I felt relieved,” said Carolyn.
“The baby boy needed respiratory support, but his condition was mild in comparison to his sister’s,” said Dr. Bartlett. “The baby girl had urgent breathing problems. We focused on establishing an airway and inserted a breathing tube for respiratory support via a ventilator. We also inserted central intravenous lines into her umbilical stump to expedite the delivery of nutrition to her body.”
After the babies were stable in the NICU, Carolyn and Barton visited their twins.
“I knew they were small, but nothing could have prepared us for how heartbreakingly tiny they actually were,” said Carolyn. “Despite the long road I knew we had ahead of us, I found comfort knowing my babies were in the Danbury Hospital NICU. Since Barton and I knew the babies were going to go to the NICU, we toured the space before the babies were born. We had already gotten to know the nurses and they were prepared for us, which was reassuring.”
Tiny Feet, Big Strides at the Danbury Hospital NICU and Connecticut Children’s
Barton spent 74 days in the Danbury Hospital NICU building his strength.
Danbury Hospital’s NIC-View also helped Carolyn and Barton stay in close contact with Mabel when they were home with Baby Barton and their 3-year-old daughter Teagan. The bedside video camera allows parents and family members anywhere in the world to see their babies by using a secure, encrypted login.
Mabel spent 99 days in the NICU. During this time, she overcame many obstacles including pneumonia and heart surgery. She underwent Patent Ductus Arteriosus (PDA) ligation at Connecticut Children’s. Brendan Campbell, MD, MPH, FACS, pediatric surgeon at Connecticut Children’s, surgically repaired a heart problem that was also causing Mabel lung complications. PDA is common in babies born prematurely. It was clear after medication therapy did not improve her symptoms that surgery was Mabel’s best option. The surgery marked a turning point for Mabel. Her vitals — breathing and blood pressure — improved and she was much more stable.
“We have been working closely with Connecticut Children’s for many years before their neonatologists were officially onsite at Danbury Hospital and Norwalk Hospital starting in July 2018 — part of an exciting new pediatric care alliance between WCHN and Connecticut Children’s. Through the alliance, we can provide the majority of care that babies need right here at home,” said Dr. Bartlett. “Because of the existing relationship, babies like Mabel and their families have benefited from streamlined communication between WCHN’s hospitals in Danbury and Norwalk and Connecticut Children’s in Hartford.”
When Mabel needed surgery to repair PDA, she was back at Danbury Hospital in just three days to continue her recovery close to home.
“Connecticut Children’s relationship with Danbury Hospital helped a lot. When Mabel needed to go to Hartford for a special surgery, Connecticut Children’s came to Danbury Hospital, stabilized her, took her in an ambulance to Hartford, and performed the surgery. She was transported back to Danbury Hospital the same way. In just three days, we were all back home and hopeful,” said Carolyn. “Upon returning to Danbury Hospital, before I even got past the parking garage, I ran into Dr. Hansen. Following a hug and sharing the good news about Mabel’s surgery, I realized that Mabel wasn’t just a patient … she was one of their babies, too.”
Carolyn and Barton developed very close relationships with Mabel’s Danbury Hospital NICU nurses and they still keep in touch with them. When Mabel was in the NICU, the nurses would joke that they were happy if they were the boring room. The nurses would say: “We want a stable Mabel today!”
Home
Barton has been doing very well since coming home from the NICU. Although Mabel was discharged from the NICU on just a very small amount of oxygen, she had to overcome additional obstacles. She was hospitalized twice since coming home due to swallowing complications, which are common for babies born prematurely. She had a gastrostomy tube (G-tube) inserted through her abdomen to help deliver nutrition directly to her stomach.
Despite these complications, Dr. Bartlett said Mabel’s outcome is quite notable.
“There is no evidence of neurologic injury despite being very high risk. Even having PDA and surgery, we were able to prevent Mabel from having bleeding within the brain.”
Carolyn agrees that Mabel is rather remarkable.
“Mabel is so resilient. As far as we are concerned, Mabel is developmentally where she should be for her age. She is very social, and she wants to be a part of everything, especially with her brother and sister,” said Carolyn. “Besides her physical challenges, she’s the easiest child! She sleeps the best and is a super happy girl.”
Mabel no longer needs oxygen support, which is an exciting milestone. Although she still has a G-tube, Mabel is making progress with her oral feeds.
Barton and Mabel turned one year old on December 13, 2018, and celebrated along with their big sister Teagan, who also has a December birthday.
As for Carolyn, she hopes that by sharing her family’s experience, she can give guidance to another family going through a similar situation.
“It’s a tough question to answer as to ‘what did it feel like?’ to go through this experience. If I had to put it into words, it feels like you’re going to have a heart attack yet you’re numb at the same time. It’s the sort of situation you’d see in a movie or read about, but never think it could happen to you. But then you’ll find that once you’re over the initial shock, you can manage each day: there are good days and bad days; days where mundane things still need to get done, like grocery shopping and laundry; and, days where putting on surgical scrubs to visit your baby in the NICU feel like your new normal. Then there are very tough days when everything else stops and you only live and breathe hour by hour and minute by minute along with your baby.”
Although the Danbury Hospital NICU is beautiful with private rooms, allowing for much-needed privacy at times, Carolyn said she felt like it was also a community where everyone was aware that the families there are in a tough situation.
“That helped, knowing that we weren’t alone. To any other families going through a similar experience as my family did, know that you’re not alone,” Carolyn said.
Summary
- In a rare and unique case, extreme preterm, very low birth weight twins were born at Danbury Hospital on December 13, 2017.
- Born at 28 weeks, the baby boy, Barton, weighed 2.5 pounds. The baby girl, Mabel, was one of the smallest babies ever born at Danbury Hospital, weighing just 1.5 pounds.
- Barton spent 74 days in the Danbury Hospital Neonatal Intensive Care Unit (NICU), and Mabel spent 99 days in the NICU. During this time, Mabel also underwent surgery at Connecticut Children’s Medical Center (Connecticut Children’s) to repair a complication affecting her heart and lungs.
- The Western Connecticut Health Network (WCHN) and Connecticut Children’s pediatric care alliance enables families to access exceptional, specialized pediatric care while staying close to home.