In honor of World Prematurity Day this Sunday, Nov. 17, Jennifer Sinconis shares her twin boys’ incredible struggle and journey after being born at just 24 weeks, each weighing only about a pound.
I remember finding out I was pregnant. My husband and I had just started trying, and we couldn’t have been happier. I also remember the shock when I found out I was carrying twins – identical twin boys. My pregnancy was pretty easy and uneventful. I was young and healthy, so we really didn’t have any major concerns. Looking back, that shows exactly how naïve I was of the potential complications that can come during a pregnancy.
The day that I hit 24 weeks I ended up being rushed to the ER. My placenta had detached, I was hemorrhaging and my boys were on their way. The doctors tried unsuccessfully to stop the labor. I remember asking my OB-GYN what this meant. What would happen if my children were born this early? His response was simply, “It’s not good.”
Born 16 weeks premature, Aidan weighed 1 pound, 14 ounces and Ethan weighed 1 pound, 6 ounces. Neither one was breathing when they were born. The doctors were able to resuscitate Aidan fairly quickly, but Ethan took about five minutes. His throat was so tiny that they had a hard time getting the ventilator tube in.
My world shattered. I was not able to move after my emergency C-section, and it was over 24 hours before I was allowed to see my boys. I remember the panic in my mom’s face that evening – she was sure that I would miss the opportunity to see them alive.
The battle begins
When I was finally wheeled into their room in the Neonatal Intensive Care Unit (NICU), they took my breath away. I knew they would be small, but no one can prepare you for how incomplete a 24-week preemie is. Translucent skin, eyes fused shut, no cartilage to form their ears or nose, and covered in wires, IVs and breathing apparatuses. They were in isolettes to keep them warm and protect them from outside germs and infection.
Machines and medications were taking over what I should have been doing for them. My primary thought: I have failed them.
My boys both made it through that first day. Then three days passed, seven days and fourteen days. But it didn’t get any easier. The issues kept changing. Each time I thought they were making progress, something new would come along to battle.
Over the first month in the NICU, we encountered brain hemorrhages, sepsis, chronic lung disease, heart disease and failure to thrive. At six weeks they needed heart surgery. At eight weeks Ethan had disseminated intravascular coagulation (DIC), a blood infection that caused him to code three times
Every day was a gamble, and the prognosis wasn’t good. Doctors told me early on that I should have hope, but I should also be prepared for the likely outcome. Babies born at 24 weeks don’t always survive. And if they do, the quality of life is not likely to be much. They were likely to be blind, deaf, and wheelchair and oxygen bound for life.
I was with my boys in the hospital every day. I needed to be there advocating for them and caring for them. Everyone told me this wasn’t my fault. They said the premature labor had nothing to do with me. There was no way to predict it and no way to stop it. But how could I feel anything other than responsible?
Coming home
Aidan was in the NICU for three months before he could go home. I remember with such clarity my feelings as I dressed him, loaded him in his stroller for the first time, and wheeled him out of the NICU. I remember looking back down the hallway at Ethan’s dark room, tears streaming down my face as I left him to take Aidan home.
Ethan was in the NICU for six months. Aidan and I came back every day to visit. Ethan was still on a ventilator, his brain hemorrhages had stopped but they had caused damage and the doctors couldn’t tell us what this would mean for his future. He also developed an eye problem common in preemies that required immediate surgery in both eyes.
When Ethan was finally discharged, the hospital arranged to have the necessary oxygen tanks, feeding tubes, heart monitors and other equipment set up at our house. We spent the next 3 ½ years in “isolation.” We had doctor appointments on a regular basis, but were not allowed to be out around other kids due to Aidan and Ethan’s fragile immune systems. In that time we overcame some preemie-related problems but also encountered some new ones. Seizures, night terrors, continued failure to thrive, hernias, adenoid/tonsil surgery and lung problems still plagued my boys.
Aidan and Ethan thriving today
Aidan and Ethan are now 7 years old. We are beyond lucky in that their prognosis today is all positive. They are relatively healthy and are in first grade – doing well socially and academically. They still need some special services and attention, but considering where we have been, we feel like the luckiest parents ever. I am so thankful for the amazing medical care we received. Without our doctors and nurses at Seattle Children’s we would be telling a very different story.
Over the years, I have taken a very active role in the Tiny Footprints Guild, an organization of parents, families and community members that works to promote awareness of prematurity and stillbirth and fundraise for research. Our work benefits the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS), an initiative of Seattle Children’s, which is on the forefront of maternal and child health advocacy and research. In conjunction with World Prematurity Day this Sunday, GAPPS and other leading global health organizations have authored a Solution Pathway to prevent preterm birth. Through these efforts we hope that one day every birth will be a healthy birth.
Resources:
- “A Pound of Hope” – In this book, Jennifer shares the full story of her twin boys’ remarkable journey.
- Seattle Children’s Neonatology Program
- Seattle Children’s designated first Level IV NICU in Washington
If you’d like to arrange an interview with Jennifer or a member of GAPPS, please contact Children’s PR team at 206-987-4500 or at press@seattlechildrens.org.
