Dear Friends,
This Web site is a celebration of eight years of survival of our daughter,
Jaclyn. Jaclyn was born May 11, 1990 with a pure esophageal atresia and is the reason why Terri and I founded this organization. We, like every other parent before us with a baby born with a birth defect, felt lost,
didn't know who to turn to, couldn't understand why this happened, or how this happened. The anxiety of thinking the nurses, doctors or someone else would get us the information we needed on the anomaly and where to go for
help never happened. The staff of nurses and doctors really could afford us little or no information. I always thought if we had support groups for patients with cancer, Down's Syndrome, scoliosis, kidney and heart
problems, there must surely be something out there for us. We were wrong. So, we began the first support group that we knew of, and of course, we were the only members. This Web site has also been the most emotionally
draining to put together for a number of reasons, but mostly because it has taken almost eight years to have finally found information I have searched for. I began searching for information on the history of these birth
defects and on survivors; after my daughter was born in 1990, I needed to know the life expectancy of a child born with esophageal atresia. Because of the ups and downs we've had in trying to establish what In November, 1939, Dr. William Ladd of Boston did surgery on a baby girl, Cameron Haight later made medical history in March, 1941 with a 12-day-old baby, Judith Mathews, born with an esophageal atresia and a tracheo-esophageal fistula, who traveled 500 miles to the University of
Michigan for surgery to disconnect the fistula that attached the trachea to the upper esophageal pouch. This little girl lived on a liquid diet for 18 years, finally having surgery in 1959 to help with the ability to eat
solids by mouth. Judith returned to Michigan on September 24, 1970 to see Dr. Haight, the man who had saved her life. Dr. Haight died the next day September 25, 1970. Was Judith still alive, I asked myself?
Where was she? Why hadn't anyone been able to find her? As I read over the history, the trials, the children that were affected, and especially about the two little girls who were the first survivors of
tracheo-esophageal fistula back in the 1930's and 1940's, I began to You can imagine my amazement when Dr. Nate Myers, who has written
so much on the history of esophageal atresia, said to me, "If we are to be purists in regard to the history, credit should be given to Dr. George Humphreys as having the first survivor of esophageal atresia, with no
fistula, a boy who was born in 1935." There was a baby born earlier than Millie that could have survived? This was unbelievable to me. Again, I began searching for not only Dr. Humphreys, but also for Besides finding these first survivors, research is going on in this country
as well as other parts of the world. There are doctors and researchers who are passionate about finding the cause of esophageal atresia, tracheo-esophageal fistula, and VATER/VACTERL Association.
Meanwhile, there are surgeons who, while always having to wait patiently for research, continue to perfect the best methods of surgery for the children. Thank God for all of these people who really do care
about our children and in their own, quiet way are doing what they can to fit the pieces of the puzzle together. We have grown to have chapters in different states and countries as
well as joined endeavors with associations worldwide to form an international organization. Some of the state chapters have broken away to form their own nonprofit organizations, but our goal has always
been to support the family first through listening and education, and to focus on keeping families and marriages together. I hope from what I have found, and am still working on, that someday my daughter, Jaclyn,
will know that I did everything possible to find the answers as to why she was born with esophageal atresia and to share that information with other parents. I want her to know that even though her life has been
more frustrating than some, if she hadn't been born with this birth defect, we wouldn't have this information, and many lives would not have been touched.
It has been a tedious journey for us as well as for you waiting for us. When we began this group, we were in such a hurry to get things done, though we didn't have the funds to do all that needed to be
accomplished. As those of you who have hung in there with us know, a lot didn't get achieved...even the newsletters that you looked forward to.
God has been teaching us that all will be done in His time, not ours. The waiting has been tedious, humiliating, and sometimes unbearable. But I
think the end result will be worth it. I owe much to the dozens of doctors, librarians, archivists, families, and patients I have spoken with over the last six years who have helped me with my research and agreed to be a
part of our medical advisory board. To the families who have joined our organization and been patient with us, we thank you for your patience. Greg Burke, founder
has become an international nonprofit organization, we decided we should begin again at square one.
The most logical place was to give you a history of esophageal atresia. The first article we know of that was written on this subject is from November, 1670, a little over 300 years ago. Thus, the history
that is included in this Web site begins at that point.
speculate what had happened to these
patients. Where were they now? Was it possible they were still alive? Had they had problems after their surgeries? After countless phone calls, and over a period of two years, I was absolutely thrilled to
locate both of these women and not only speak with them on numerous occasions, but even to visit Millie and her splendid family!
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