Over 3 hours away from home and just 23 weeks and 1 day into her pregnancy, Barbara Lancaster- Beresnoy and her husband got the shocking news–their baby had to be delivered immediately. In the fight of his life, Gavin defied the odds and after a 131-day battle in the NICU, he was finally able to go home. Today, he is a healthy and happy 18-month old. Barbara has kindly shared her story below:
“Gavin Chase was born at 23 weeks 1 day weighing 1 pound 8 ounces. Gavin’s early birth came as a complete shock and we had no idea what we were in for. My husband and I were away for business in Verona, NY, 3.5 hours from home with our then 9-year-old son, Dylan (a full-term, 7.5 pound baby). It was the last night of our 6 night stay that I started feeling pains that I assumed would pass. By 5 am we were on our way to a small local hospital where I was told the baby would be born in the next hour. The closest level 4 NICU was in Syracuse and a transport team was waiting in the OR to take care of Gavin and bring him on the approximately 45 minute trip to Crouse Hospital in Syracuse. The next morning we received a call to get to the NICU asap because Gavin had a serious brain bleed and they did not know how much longer he would be with us. Gavin had a grade 3/4 bleed… the most severe. This bleed decreased his slim odds of surviving even further and could affect him in the future. We stayed on the NICU floor for the next week as Gavin fought to survive, but eventually moved into a nearby hotel.
Gavin spent his first month at Crouse and experienced several other complications, as well as a PDA ligation during his 2nd week. But, he was a fighter, and we let him guide our decisions. By day 27 we made arrangements for Gavin to be flown to Westchester Medical Center, a regional level 4 NICU closer to home, although still an hour drive, and our other son. Over the next 3 months Mom, Dad and Dylan were constantly at Gavin’s side through all of the ups and downs (sometimes it felt like there were only bad days). There were a lot of tears, good and bad, as we tried to adjust to this strange way of welcoming a baby to the world and becoming a family of four. As we got closer to discharge, Gavin was scheduled to have both an MRI to assess the damage from the brain bleed and bilateral hernia surgery. The surgery went well and we received wonderful news that the MRI showed his brain bleed never reached grade 4, which can make a huge difference in his future. After 131 long days, Gavin came home with us.
Today he is a very happy and healthy 18 month old. He has happily surprised every one of his doctors. He weighs 24 pounds, is walking, eating everything he can get his hands on, and is no longer on any meds or monitors. This experience has affected our family deeply. We will never forget the people that helped us get through our toughest, yet most rewarding experience. Every family member, friend, nurse, doctor and charity that helped Gavin get to where he is today and that supported us so we could be with him while he was in the NICU will forever be in our hearts.”
Thank you Barbara for sharing your story in honor of World Prematurity Day and helping raise awareness about the challenges families face with prematurity and long NICU hospitalizations. We are so happy to hear that Gavin is doing well!
My relationship with prematurity can be likened to a terrible nightmare that suddenly turns out to be a dream come true. In May of 2012, I delivered a 1 pound 4 ounce little girl at 23 weeks into my pregnancy. She was just 11 3/4 inches long. My daughter, who we named Joy, was born premature as a result of my 100% placenta previa. I was in and out of the hospital from 17 weeks gestation until her delivery, as a result of my fourth episode of extreme hemorrhaging. I almost lost my baby and my own life on four different occasions during my pregnancy. My pregnancy with Joy was not at all what I had experienced with my previous pregnancies resulting in three full-term healthy boys. Joy was considered a micro preemie (a baby delivered before 26 weeks). Any delivery before 37 weeks is considered premature. The March of Dimes (rightfully so in my opinion) is now advocating that elective deliveries not be performed before 39 weeks to allow for full brain and lung development.
As parents of preemies, we may have taken very different roads to the NICU, but we all arrived with bumps and bruises. There is nothing normal about delivering a baby and then returning home without it. There is nothing normal about not being able to hold your baby for weeks or months. There is nothing normal about the hours spent pumping breast milk and then watching it drip down a feeding tube into your baby’s mouth or nose and not participating in the feeding at all.
After my delivery, I could not see my daughter for two days, due to complications from my surgery. When I was finally wheeled in to see her, I was shocked! She did not look like my other children did as newborns. Micro preemies look like tiny little aliens with transparent skin. They have numerous tubes and wires attached to them while a ventilator initiates each breath. Parents are lucky if they can stick their fingers into a hole in their isolette (incubator) while hoping their baby will wrap his or her fingers around theirs for just a minute. Visits and bathroom breaks are planned around vital sign checks and diaper changes in hopes that they will catch a glimpse of their baby without goggles covering their eyes. And every goodbye is feared to be the last.
According to the World Health Organization, an estimated 15 million babies are born premature each year. About 1 million babies die annually from preterm birth complications. Across 184 countries, the rate of preterm birth ranges from 5% to 18% of babies born. The March of Dimes says that each premature birth costs around twelve times as much as each full-term healthy birth, resulting in the United States spending about $26 billion a year on prematurity. While the money spent on prematurity may surprise you, the long term health effects often felt by these premature babies will terrify you. A premature birth may lead to many complications such as cerebral palsy, impaired cognitive skills, vision problems, hearing problems, severe breathing problems, behavioral problems, and overall chronic health issues.
My micro preemie is now 18 months old and I am watching her sleep on the monitor screen as I write this. She is almost walking. I expect her to master it within a week or two. Joy loves to play with her three older brothers and enjoys eating anything put in front of her. She says a handful of words and loves to play with legos, blocks and be read to. Her only major impediment from being born 17 weeks early is a lung disorder called BPD (bronchopulmonary dysplasia). Because of this, any ordinary respiratory virus can end up turning into pneumonia due to scarring on her lungs. Other than that, she is just like any full-term baby. You would never be able to tell that she had such a difficult beginning by looking at her. We are so blessed that Joy is in our lives.
For World Prematurity Day, please take a moment to honor those babies who were born premature and the memory of those who lost their battle with prematurity and help spread awareness of the causes, signs and complications from premature birth.
About Jennifer Degl
Jennifer Degl (NY) is an author, teacher and the mother of four, including a 23-week micropreemie named Joy. Joy is Jennifer’s fourth child who was born 17 weeks premature, weighing only 1 pound 4 ounces, due to placenta previa. In her new book, From Hope To Joy: A Memoir of A Mother’s Determination and Her Micro Preemie’s Struggle To Beat The Odds, Jennifer recounts the struggles and triumphs of her eighteen-month journey from the decision to have another child, to the birth of her micro preemie at twenty-three weeks, and this tiny girl’s fight to survive. From this pregnancy and Joy’s 121-day NICU stay, Jennifer learned more than she could ever have imagined about strength, faith, love, hope and miracles. Today, Joy is thriving and the only major complication from her premature birth is a lung disorder called BPD (bronchopulmonary dysplasia). For more information on Joy’s progress and Jennifer’s book, please see http://www.micropreemie.net. You can also connect with Jennifer through her personal blog at http://micropreemie.net/category/blog/, through Facebook at http://www.facebook.com/jenniferdegl and on Twitter at http://www.twitter.com/jenniferdegl.
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