WHO WE ARE
Avery’s Angels Board of Directors
Jessica Deighan M.Ed, BSSE.
Developmental Specialist Instructionist, Dynamite Therapy Arizona Early Intervention Program, Grand Canyon University Doctoral Canidate 2018.
Marcia L. Feldkamp, PhD, PA
Associate Professor, Division of Medical Genetics, Department of Pediatrics, University of Utah School of Medicine, SLC, Utah
BA Psychology UNC 2007, MAT Special Education UGA 2012
Beth Moore, M.Ed.
Family Services Manager, Partnership for Children, Johnston County, NC.
Mark Puder, MD, PhD
Boston Children’s Hospital, Professor of Surgery Harvard Medical School
Melissa Turner RN, BSN
Newborn Critical Care Center Charge Nurse, North Carolina Children’s Hospital, Chapel Hill, NC
Avery’s Angels Team
Meghan Rauen – CEO, Founder
In 2009 my life changed as I knew it; I became a mom to an amazing little boy named Avery. His case of gastroschisis looked to be extremely rosy; small loop out, good size and gestational age, strong lungs and heart. However after 107 days Avery moved very unexpectedly to watch over his family, imprinting a legacy of hope and advocacy in my life. I was “that mom” with my spiral notebook, searching the internet every minute I got trying to figure out when I was pregnant what to expect, where to go, during treatment I was looking for validation for medical treatment and case progression. There was not anything formalized at the time, and I knew from being told the numbers that there had to be many more like me. With the encouragement of every “angel” that had been over his case- from family to his medical team, I started blogging, emailing and posting about creating a community, providing support, education and information for families affected and the world about the disease that was on the rise. more…
Phebe Hovingh – COO
My Gastroschisis story starts with my second son’s 14 week ultrasound. Like so many others I had never heard the word “Gastroschisis ” before that day, let alone knew what it was. The rest of my pregnancy was filled with appointments, research, and a whole lot of prayer. In 2008 (when we had our diagnosis) Avery’s Angels Gastroschisis Foundation didn’t exist. However the hospital I was to deliver at had a parent support program. I was so blessed to talk to and listed to another Gastroschisis mom. She was amazingly helpful. Her story helped carry me through so much. We are good friends to this day. We spent 6 months in the NICU, and 6 more under continued home care. He was given a clean bill of health at 2 years and lives a super active life today. Yet, in those first few weeks of NICU I started to realize how different Gastroschisis can be from one case to another. I wished there were more resources and support. more…
Marcia Feldkamp – Officer of Birth Defect Research Pediatric Genetics
Dr. Feldkamp is an Associate Professor in the Division of Medical Genetics in the Department of Pediatrics. Her interest and career in birth defect epidemiology began while working as a physician assistant and caring for women of reproductive age. Due to the limitations of existing data in Utah, Dr. Feldkamp led the efforts to develop a co-agency program between the Utah Department of Health and the University of Utah Department of Pediatrics for a clinically based birth defects surveillance system. Dr. Feldkamp was one of several founding members of the National Birth Defects Prevention Network in 1997 and became President of this organization in 2005. This Network is a cohesive group of individuals from states in the US that are interested in birth defects surveillance, research, and prevention. more…
Liz Tuck – Director of Human Resources
My name is Elizabeth “Liz” Tuck living on the Western Slope of Colorado on our small farm living life post military. Our gastroschisis journey began May 13, 2015. After three very normal pregnancies, we decided our fourth (a rainbow baby) would be born at home with a skilled midwife team. I had one ultrasound early that didn’t catch the gastroschisis. When Silas was born into my own arms, we had a complete surprise! He had his small and large intestines, stomach and liver born outside but still managed full closure at 7 hours old with no organ damage. He spent 22 days at the NICU. Silas had a second surgery at three months old for an umbilical hernia repair. We have been extremely blessed! I did not find Avery’s Angels until after we were home. I instantly knew I wanted to be involved to the max! I want to give the support I didn’t know even existed. more…
Jess Bode – Director of Bereavement Support
My name is Jess Bode. My own personal journey with gastroschisis ended before it even began. In 2018, I was a pregnant mom of two beautiful boys and couldn’t wait until their brother or sister came into this world. At 11 weeks, we discovered our sweet babe had gastroschisis. Over the next couple months, we were overjoyed to learn he was a boy and terrified to learn that his case was severe, and his prognosis was not good. At a follow up ultrasound, we discovered he had died in utero. We said hello and goodbye to our Leith Alaric on April 20, 2018. I am now a mom of four. I have three wonderful boys here with me and one that lives on in each of us.
Kaitlyn Pitman – Landmark Lightups and Proclamation Requests
My name is Kaitlyn, at 20 weeks I found out I was going to have a baby girl born with gastroschisis and I found Avery’s Angels while I was pregnant. Once my daughter was out of the NICU I knew I wanted to give back to other parents affected by Gastroschisis. I became a parent volunteer and helped with carepackages for awhile. But then I had the chance to step in and take over Social Media and I love it. I love that I can give back to Avery’s Angels, because even to this day they are still helping out me and my daughter. Now, as the Awareness Day Coordinator, you can contact me for more details on how to request your state, region, or province declare July 30th as Gastroschisis Awareness Day. Or, visit our Official Proclamation Programs page. more…
Christie Biggers – Director of Social Media
Bam! There goes gravity… I remember sitting in shocked silence as the doctor highlighted my sweet baby’s little extended loops of bowel and tried to explain to us what the word Gastroschisis meant. I didn’t even know what questions to ask, what I was supposed to think or to do. That’s when I heard the doctor gently offer termination of my pregnancy. Anger flooded in… “No! Absolutely not! This baby is coming into this world!” I will never forget that he told us not to go home and google the word because it would frighten us, unnecessarily. Of course, that’s exactly what we did! We were devastated. Back then, in 2004, social media wasn’t really available and I remember feeling so alone. No one could even pronounce what our sweet Ava was facing, much less understand it. more…
Megan Turcotte – Graphic Designer
In 2003 Megan Turcotte’s son Josh was born with rare complications arising from gastroschisis. He developed Short Bowel Syndrome from this complication. Megan and her husband journeyed through the medical world never knowing another parent who had a child like Josh. While Josh grew, Megan never stopped searching for information and an answer to the question, “Why?” During this search, in 2009, she found Avery’s Angels. It was the first time in 6 years she didn’t feel alone in her journey. Megan joined in hopes of helping raise money for AAGF by selling some of her craft goods. Her love of art and creating transformed itself into graphic design for Avery’s Angels. With self taught skills she now designs AAGF’s logo, flyers, brochures, business cards, along with running and designing for Avery’s Angels online Cafepress shop. more…
Haley Odvody – Graphic Artist
Hi, I’m Haley! I’m a graphic artist with a Bachelors degree in Fine Arts. I love to create beautiful, usable, professional designs but I also like a challenge and any chance to let my inner child take command. When my husband and I found out our baby boy, Jackson, would be born with gastroschisis we were shocked and devastated to say the least. I had never heard of such a thing and researched like my life depended on it. Then I came across Avery’s Angels and reached out for guidance. This foundation gave us the hope and knowledge we needed to arm ourselves with in order to bring our son into this world with a fighting chance. Because AAGF does such amazing work I jumped at the chance to give back in the best way I know how. more…
Lea Krutel – Director of Web Development
Lea came to join Avery’s Angels Gastroschisis Foundation after the unfortunate loss of her first child, Amara Belle, in 2009 due to complications arising from the birth defect when she was just three months old. During these difficult times, Lea’s father-in-law was searching the internet for emotional support and further information on gastroschisis, and came to find Meghan Hall through her blog. He introduced the two via email and they came to find that they had experienced very similar paths in regards to the birth and loss of their children within a very short time of each other. In 2010, Lea joined AAGF as a Volunteer Supporter, providing emotional support to expecting parents. Later, in 2014, Lea and her husband, Bryan Richter, took on the task of rebuilding the current website for AAGF to create the largest gastroschisis compilation available on the internet. more…
Avery’s Angels District Managers
District Managers are responsible for providing Hub Leaders with mentorship, organization and development. They help interview, train and place new leaders and volunteers, help localize efforts in states and grow the awareness and support efforts in their districts. These are senior Hub Leaders who have had tenure with our organization and know the complexities of gastroschisis, local government and support mechanisms and medical systems.
JorDawn Ramirez – Midwest District Manager – Illinois, Indiana, Iowa, Kansas, Kentucky, Michigan, Missouri, Nebraska, Ohio, Oklahoma, Wisconsin
My journey began in 2017 when my 3rd daughter was diagnosed with Gastroschisis during a gender reveal sonogram. I had no idea that my life would be forever changed that day. I went through the rest of my pregnancy feeling alone, terrified, and nervous for the unknown future. Numerous appointments, tests, and biweekly sonograms followed after the diagnosis of Gastroschisis. Due to complications, my gastro warrior, Jevyllíaña, was born prematurely at 35 weeks on 01/05/18. She had her Gastroschisis repair (closure) surgery on 01/08/18 and spent 20 days in the NICU. more…
Analeise Guild – Pacific District Manager – California, Hawaii
My start with gastroschisis began very different than most. I had never heard the word gastroschisis until my daughter was 18 months old. This is because my daughter was adopted. From the second I heard what she was born with, the researching began and to this day has not ended. My daughter was left with short gut syndrome from gastroschisis. This left her dependent on IV nutrients until she was almost 5. I am located in Northern California and have 4 children ages 5 and under. Between kids school and hockey, I enjoy meeting new families at the local hospital and hope to help as many as I can. I have a passion for families that are affected by gastroschisis and I hope to help as many people as possible through my role with Avery’s Angels Gastroschisis Foundation. more…
Laurel-Eden Combs – Southeast District Manager – Alabama, Arkansas, Delaware, Florida, Georgia, North Carolina, South Carolina, Tennessee, Virginia, West Virginia
Hello! My name is Laurel-Eden Combs and I’m the proud momma of a beautiful Gastro boy named Jackson-Lee! At 15 weeks gestation I went to the doctor for an appointment and found out that my son had Gastroschisis. Like many other families, my husband and I had a million questions and emotions. We had never heard of Gastroschisis and we were scared, but we did our best to enjoy my pregnancy as much as possible. When Jackson-Lee was born, he spent 37 days in the NICU. He is now a thriving little boy! I have never forgotten the struggles that we faced in the beginning of his life. I am involved with Avery’s Angels because I remember the obstacles of his diagnosis like it was yesterday. more…
Position Open – Southwest District Manager – Arizona, Colorado, Louisiana, Mississippi, Nevada, New Mexico, Texas, Utah
Gaby Luna – Northeast District Manager – Connecticut, Maine, Maryland, Massachusetts, New Hampshire, New York, New Jersey, Pennsylvania, Rhode Island, Vermont
I’m Gaby Luna. your New England District Manager and MA Hub Leader. I was born and raised in New Jersey, but now live in Massachusetts. I am a consumer advocate for an infusion company and caregiver to a fun and wild boy who was born with Vanishing Gastroschisis in September of 2016. I registered for support with AAGF the day I found out at 20 weeks that my son had Gastroschisis. After he was born I kept to myself . I have always been a person to do everything on my own. I don’t like seeking out help/support. As the months passed my son was still in the NICU and not ready to be discharged anytime soon. I transferred his care to a specialized hospital . It was that day that AAGF reached out to me asking what was going on , if I needed any thing, if everything was okay and how could they help. more…
Christine Fowler – Northwest District Manager – Alaska, Idaho, Minnesota, Montana, North Dakota, Oregon, South Dakota, Washington, Wyoming
My journey began in 2017. I found out I was having my 3rd baby. I have to admit, I was not very excited as it was not planned. I already had a 20 year old daughter & a 13 year old son. Once I heard that heartbeat; I just knew it was meant to be. At 20 weeks, I was told after an ultrasound that my baby girl had Gastroschisis. Being a geriatric nurse & in the medical field for 21 years; you would have thought I knew about Gastroschisis. I was sent to Seattle for further testing. At 23 weeks, I was informed sitting all by myself surrounded by a team of doctors in a room with a long conference table that they also believed she had a cloacal malformation. I was told that having a cloacal malformation in addition to Gastroschisis that she did not really have a chance of survival. more…