The TEF VATER INTERNATIONAL SUPPORT GROUP was started in 1990 after the birth of our daughter who was born with esophageal atresia. Because there were no support groups for this birth defect in the United States or any where else that we could find we decided that we would start one and offer information on what we experienced with our daughter in the hospital such as going into the operating room, being in the waiting room, the recovery rom, the neonatal intensive care unit and the daily care by the nurses, the social workers, chaplins and ever mouting teams of doctors, residents doctors in training, laboratory technicians or what we all call them (blood sucking VAMPIRES)
Her problems with the naso gastric tube suctioning, gastrostomy feedings, esophagostomy problems, different catheter problems, feeding problems such as bolus feedings, eating by mouth and stomach, stoma site infections and granulations, reflux problems, facial palsy, growth and weight problems, walking, and many other problems. We felt we could share alot with other parents about our experience and the many ups and downs of having a child with esophageal atresia.
We soon found that babies like our daughter were also born with esophageal atresia and tracheoesophageal fistula. This is two birth defects. This is where the esophagus the hollow food pipe that you swallow with attaches to the trachea which is the wind pipe or breathing tube. When the esophagus attaches to the trachea food and saliva may end up in the lungs instead of the stomach and cause many other problems if not corrected as well as death. After a couple of months we were contacted by a grandmother who had a granddaughtrer who was born with esophageal atresia and tracheoesophageal fistula and group of other birth defects that was coined the VATER ASSOCIATION that included the esophagus and trachea.. This was the first time we had heard about the name VATER.
I Greg am a Physicians assistant and ran an emergency room as well as worked in general surgery and orthopaedic surgery for 10 years. During this time I was never exposed to babies born with these types of birth defects. What I knew about birth defects was that my father was born a palsy baby which is upon delivery they used forceps to pull him out of the birth canal and damaged the nerve in his right arm. He never had the use of his right arm because it was crippled. All 5 of his fingers were contracted in a fist, his wrist was locked and his arm from the elbow and shoulder were bent at a 60 degree angle and hung at his side. I have had much experience in the hospital with asthma, bronchitis,pneumonia, blood clots, oxygen tent and many other problems.. I spent years in the hospital as a patient so I can relate to many of the problems our parents and kids go through and know how frightening it is for parents to see their babies struggle to live. As a child you never forget the look on your parents face and in their eyes when they are so helpless and when they have to leave you.
We did not have a particular name for the support group at the time. I wanted to use the word EAT for two reasons; one because that was one of our goals for our children to eat by mouth and second to use EAT which stood for the esophageal atresia team in our name because thats what we felt we were, a team of parents sharing our knowledge and information about what we had been through and were going through with our baby, other kids, spouses and families, along with the everyday ups and downs of life. We also wanted to include the words chew and swallow because after we got our kids to eat by mouth this was the next step to chew the food, then swallow it and wait and see what happened. But this name did not include many of the other birth defects and problems that kids were born with and the problems that our others members had shared with us in the short time that we had become a little unknown support group.
We soon found out that there were more babies born with a tracheo-esophageal fistula with esophageal atresia and multiple birth defects then were born with esophageal atresia alone. We came up with using the name or acronym EASTER to stand for Esophageal Atresia Support and or Society Tracheo-Esophageal fistula Research Registry or using EASTER by itself instead of VATER because all of the letters in EASTER included all the birth defects in VATER plus the extra E that could be used for eye and ear defects.I still like the name EASTER babies.
We decided to use the first letters in each word of tracheo-esophageal-fistula to give us the name TEF and then the other birth defects that were more common than esophageal atresia the group of birth defects coined VATER. This is how we came up with the name TEF-VATER..
What we offer is long term support to parents and families, information about the different birth defects, the operations to correct them, the problems before and after surgery, coping skills while you are on the roller coaster, the many problems before and after you bring your child home, a sense of humor to let you know that you are not alone and you are not the only one to feel what you feel and to give you some breathing room to cry, vent your frustrations about your life and your babies situation, the pain and anguish that you see when they are hooked up to all the tubing and machines and to laugh about your life, and smile about your situatuion after you pick yourself up off the floor to face another day. To be there for you when you need us 24 hours a day and let you know that you are not alone with your thoughts, feelings and emotions. We want to let you know WE CARE about YOU and your family and your marriage.
We don’t have answers to many of our kids problems but we have felt the same pain and anguish. We know and understand how frightening it is to see your child confined to bed with problems that you had no idea that existed. We know the lonliness and grief that comes with having a baby with a birth defect.
The grief and emotions that one day you feel like you have gotton over the hurdle to wake up in the middle of the night or are at home or in the car and wonder to yourself is this really happening to me or is it a make believe scene. We have the first hand knowledge of the strain this puts on the relationship between husbands and wives and how one spouse may not be involved in the care of the child as much as the other. We understand that men and women are made up differently especially when it comes to emotions.
We know what it can do to a marriage and to other members of a family because if other children are involved they feel they are being left out and that how come mom and dad are always with the new baby. How can parents divide their time between what was a normal life before a new baby came into their lives and now trying to juggle being a husband trying to work and hold down a job with emotions somewhere else, a wife trying to be a mom to her other children, a wife to her husband caring for herself and caring for a house and now the unexpected life of being torn by family and the need to be at the hospital to care for a sick child.
You will be amazed at what you will do and you may not be sure how you did it but it all does become manageable with help from each other and family and extended family.We want to help if you need it, we listen well and most of all we want you to know that YOU ARE NOT ALONE.