In the fall of 2013, Samara Sweig gave birth to twin girls, Tilly and Ivy, at just 28 weeks. During the many weeks that followed, specialists at Hassenfeld Children’s Hospital cared for the twins around the clock in the KiDS of NYU Langone Foundation Neonatal Intensive Care Unit (NICU) and tended to the needs of Samara and Louis, her husband. Today, Tilly and Ivy are thriving—and Samara participates in the Sala Family Advisory Council to pay forward her family’s transformational experience.
What was it like to give birth to twins at just 28 weeks?
Samara: It was frightening. There were so many unknowns and fears that came along with their birth. We didn’t know if they would be born alive, or if they would be able to breathe, because they were born so early and were so small. It was overwhelming and scary.
How did you manage this fear when Tilly and Ivy were brought to the NICU after they were born?
Samara: For the first 24 hours, I was really afraid to see them. But once I did, as any mother would feel, I wanted to do anything I could for them. In the NICU, babies have so many medical needs that parents can sometimes feel like bystanders. In time and with the help of the NICU staff, my husband and I learned of the different ways that we could participate in their care. I pumped around the clock so they could have Mamma’s milk. We provided them kangaroo care for hours every day. We talked to them, held their hands, and were eventually able to bottle-feed and change them.
Samara, Louis and ten-year-old twins, Tilly and Ivy
How are Tilly and Ivy doing now?
Samara: They’re our little miracles. They’re nine years old. They’re fierce, smart, and kind. They’re tall, like their father, and beautiful. They’re strong; Ivy recently completed a 5K run and Tilly just finished the soccer season. They truly amaze us, and I constantly remind them that they can do anything—because they’ve already done the hard part.
Babies born at 28 weeks don’t always thrive the way that Tilly and Ivy did, so I count my blessings every day. Receiving the care and support of this amazing children’s hospital was a huge part of their really hard and miraculous journey.
The support that we got from the hospital didn’t just end the day that the girls were discharged from the NICU. It continued as we met with an interdisciplinary care team every six months for the first two years to see if they’d need any extra support during those early times.
Tell us about the Sala Institute Family Advisory Council. Why did you join and what is your role?
Samara: After our last visit with the NICU follow-up team eight years ago, the woman running the program told me about the Sala Family Advisory Council and asked if I might be interested in joining. It sounded exactly like something I wanted to do.
After spending so much time in a hospital, you have so many thoughts on what worked well and what could have been better.
It’s remarkable to be included in an opportunity where feedback from families is sought after with the goal of providing exceptional care to patients and their families.
I’ve been a part of the Family Advisory Council for eight years. As council members, we’ve weighed in on unbelievable initiatives and met with the heads of most departments. We’re asked what we think of new projects and we share ideas for how to make them better.
This work sounds really unique.
Samara: It really is. It’s best in class. We’re very fortunate to have this caliber of children’s hospital in the New York area—one that exceeds medical standards and puts children and families at the center of its work thanks to Sala Institute.