My Memories

by Judith Mathews

I was both stunned and exhilarated to get your phone call the other evening and to hear you had been trying to locate me for so long.  I realized I had been trying to stay obscure but did not know I had done such a good job at it!  You mentioned other health problems I may have, and they are numerous.  I have a hiatal hernia, a heart murmur, scoliosis, things out of place inside of me, and an uneven number of ribs, plus carpal tunnel syndrome, duodenal ulcers, depression, neurological problems, and arthritis.

I am so glad there is a newsletter now for people who have children with these birth defects.  It will be such a help and comfort for them to be able to read about others who are having the same problems as they are.  I am also extremely interested in the cause of these birth defects and of all the other illnesses as well.  If there is any way that I may be of help to you regarding my own birth defect, and research going on now, please let me know.

You asked me to write briefly about what my life has been like up until now living with TEF.  I will try to start back as far as I can remember.  It's in bits and pieces.  First, I want to say how very fortunate I was to have had Dr. Cameron Haight, along with Dr. Towsley, thoracic surgeons at Ann Arbor University Hospital, as my doctors.                            

I seem to remember the first time I walked on the grass-ever-at Ann Arbor.  I was afraid to touch it; it looked and seemed so strange and ominous to me.  I must have been kept completely inside up until then, as I didn't leave the hospital to go home until I was nearly 2 years old.  I have the little wooden table and chairs that were sent home with me, that were given to me while I was there.  I also recall a sun-room with tables and chairs and playthings for little children.  I used to like to go there to play.  To this day I feel like I am at home whenever I am in a hospital, as that is the place of my first memories of childhood.

I don't remember going home for the first time with my mother and father, but I am sure everything must have seemed very different there to me, too.  I have the letters written to my mother by Agnes Collins, my nurse all the time I was there.  I also have the telegram, sent to our neighbor's house, to take to my parents, that I wasn't expected to live.  My father bought a burial plot for me at that point, I was told.

After finally coming home, there were countless trips to the doctors; some in Manistique, some in Marquette, which was 100 miles away; and once in a while a stay in Ann Arbor University Hospital, where they would try to stretch my esophagus by having me swallow a bead on a string; and make endless x-rays as needed.

It appears that all the letters of my progress over this period of time were written by Betty Lou Robinson and Alice Roberts.  These letters were numerous, several times each month or more, written to my mother.  Every bit of food I ate had to be pureed through a Foley food mill by my mother.  Even then, thinned with water or liquids, I had trouble in getting it down.  I wasn't allowed to eat a strawberry until I was about seven as even those tiny seeds could stick in my esophagus.  Raspberries had to have all their seeds removed also.

In grade school I took my lunch to school.  It consisted mostly of broth type soups, as anything else I ate caused me to leave the room every other bite to get it up because it wouldn't go down my esophagus and would become lodged there.  When in high school, where there was a cafeteria, I still took my lunch and sat in the gym to eat where there was a restroom near by that I could go to as needed to get food out of my throat.  This was all very embarrassing for me, so when in public I usually only had a liquid malted milk, if I ate at all.

One day I got a piece of steak caught in my esophagus, and after waiting nearly five days-no food or water-I was finally forced to go to a doctor.  Believe me, one gets thirsty and misses water way sooner than food.  After removing the piece of meat, the doctor showed me that my esophagus had grown almost shut (with scar tissue) with an opening only as big as the tip of a pen for food to pass through.  As circumstances didn't permit me to return to Ann Arbor to have Dr. Haight reoperate, another doctor did the surgery at the St. Vincent Hospital.  It was after this that I was able to eat a meal, for the first time in my life, and have it all go down without any problems...like a normal person.  I had waited all of my 19 years for this moment.  The magic of eating, and actually having the food go down every time, has never ceased for me.

I was so fortunate to be able to go to Ann Arbor University Hospital, just days before his death, and speak with Dr. Haight and thank him personally for having actually given me my life back.  And the last, but foremost, thing that I have to do is give my thanks and gratitude to God without whom none of this would have been possible.