“As we’re having this conversation right now, there are other families with babies in NICU, and they should know that although it is an incredibly difficult time, there is hope. No two stories are the same — just look at the difference between Barton’s and Mabel’s — but in a year from now, they’ll be in a much better place, too.”

By Kendra Bobowick

Barton Rohde Conant was 2½ pounds when he was born at 28 weeks on December 13, 2017 at Danbury Hospital. His twin sister, Mabel Rose Conant, however, was about half his size at 1½ pounds. She is one of the smallest preterm babies ever born there, according to an article published by Western Connecticut Health Network that grandfather Scott Conant shared with The Newtown Bee.

Both impossibly small, Barton spent 74 days in the hospital’s Neonatal Intensive Care Unit (NICU), and Mabel spent 99 days there, while mom and dad, residents Carolyn and Bart Conant, waited to bring them home.

Early in the pregnancy, an ultrasound revealed that Mabel had severe growth problems and was falling behind Barton, who was developing “on track,” Ms Conant said. His sister needed to come out to survive.

“She was growth-restricted. Based on her setup in the tummy, she wasn’t getting what she needed and had to be delivered early. He was fine and would have been on track,” She said. “We didn’t want both to be born too early, but she had to come out. Mabel was so small, even for a 28-weeker.”

The twins then spent weeks in the NICU. “They really didn’t see or touch each other for months — about three months — and we worried they might not have that special twin connection, but they do,” said Ms Conant. The twins are fraternal, she said. They have “the same genetic relationship to each other as to our older daughter, Teagan.” Teagan is 3 years old.

Although their original due date was March 2018, the preemie twins recently celebrated their first birthday.

Ms Conant spent some time with The Newtown Bee remembering the past year’s journey toward two now-healthy and growing twins.

Barton was discharged from the NICU on February 25, 2018, and Mabel was discharged on March 22, 2018. Ms Conant said, “They came home at different times. He came home sooner, and he had no complications other than being premature, while Mabel had a tougher time.”

When her son came home, “It was wonderful, but tough because [Mabel] had to stay in the hospital.”

The Conants had to “split our time between home and the hospital. When Mabel finally came home, “we were super ecstatic,” Ms Conant said. But the health issues continued.

“She was on oxygen,” Ms Conant said. The parents “had to have a steep learning curve to juggle her regimented medicine schedule, feeds, oxygen settings, and continuous monitoring.” Mabel “was back at hospital a couple of times,” for various reasons, Ms Conant said.

Staying On Track

As her daughter slowly grew stronger, Ms Conant said, “She was getting bigger, but as she did, and therefore needed larger volume feeds, her swallowing issues increased. Some of the food was going to her lungs, and that had us back in the hospital. Swallowing, for a preemie, is a common issue. Swallowing is actually a pretty complicated process, and NICU babies who have feeding tubes for long periods of time get to a point where their food intake out-paces the development of their swallow. “

Ms Conant “never pictured life like this,” she said. “Teagan was born textbook and on her due date, and this is the complete opposite — such a journey, but where they are now, they are doing very well.”

She said, “we are extremely hopeful that we’re on the upward trajectory.”

“[Mabel] just needs to keep getting bigger, and it will snowball in the right direction. Soon we can just worry about normal things,” Ms Conant said.

“Mabel is doing remarkably well considering all of the hurdles that she had to overcome,” Ms Conant said. “The potential for her to have long-term effects was very real. However, from what we can tell at this point, she’s a happy, social baby hitting all of her milestones — on her own timeline, that is, but still hitting them nonetheless.”

Barton is growing up “right on track, and Mabel is small and on her own growth curve,” Ms Conant said. “She’s a peanut, but she’s making big strides. She is sitting up, almost crawling, and demanding attention. The other day, she even stole a toy from Barton!”

Early on, the Conants’ talks had centered on Mabel’s medications and oxygen flow. “And now we are talking about her day and talking about Mabel and not her medical conditions, and she is becoming her own little person now,” Ms Conant said.

She hopes that sharing her story helps other parents facing the same circumstances. “We read a story of a little boy in similar situation in Boston Children’s Hospital, and reading his story really helped us.”

Ms Conant added, “As we’re having this conversation right now, there are other families with babies in NICU, and they should know that although it is an incredibly difficult time, there is hope. No two stories are the same — just look at the difference between Barton’s and Mabel’s — but in a year from now, they’ll be in a much better place, too.” She believes that foresight would have helped her.

“You wait for them to come home for so long, but the journey isn’t over; there is a long road ahead, but you’re definitely in a better place,” she said. “And we have found it’s amazing how much people help and care; the outpouring was overwhelming.”

Admitting that “It sounds cliché,” her experience with Bart and Mabel “puts things in perspective. Little things that might have bothered you before, they just don’t matter.”

Being home with a three-year-old and two one-year-olds “can be tough,” Ms Conant said, “But then I think, ‘I’m home with them,’ and that’s wonderful, and a normal day is a great day.” Her children are healthy, and they should “just enjoy being together,” she said.

The Conants are now turning their thoughts toward the future. “Now, we are super excited to see them grown up together and see how the twin relationship develops. There is something to it…”

Dr Laura Nowacki, the Conant’s pediatrician, has been “absolutely amazing with helping us navigate Mabel’s complicated medical issues as well as her regular (at times multiple times a week) weight-checks and check-ups. She really has been our rock for Mabel’s care since leaving the NICU,” Ms Conant said.

WCHN Article

In the United States, about 60 percent of all twins are born prematurely (before 37 weeks gestation).

Said Dimitry Zilberman, DO, a maternal/fetal medicine specialist at Danbury Hospital who oversaw Ms Conant’s pregnancy, “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 they would have to deliver Mabel at 23 or 24 weeks “to give her a chance to survive, although the odds of survival would be low.”

Barton could have had “complications from being delivered too prematurely,” Dr Zilberman said. “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. We decided to continue the pregnancy, with very close monitoring. Our goal was to make it to 28 weeks.”

Jeffrey Bartlett, DO, director of Neonatology, had said, “The baby boy needed respiratory support, but his condition was mild in comparison to his sister’s. 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.”

During Mabel’s time in the NICU, “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.”

Despite 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.”

Read the full article at westernconnecticuthealthnetwork.org/newsroom/article-listing/dh-nicu-babies.

Also involved with the twins were 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), according to the WCHN article.

Permission to use excerpts from the WCHN article was granted by Amy Forni, PR Manager, Western Connecticut Health Network.