Friday, April 3, 2015

Chapter I of A Mother's View on Spina Bifida

1969 – 1976 (in the beginning)

Imagine a thinly carpeted, fiercely cleaned floor of a living room in a tract home in West Texas in the late 60's.  There I sat, along with Paul, my husband of six months. We were inhabiting, for just a portion of the summer, the home of my in-laws. My father-in-law, Doug, was working in Alaska while Bess kept the home fires burning. This was a two month extended visit before Paul and I were to move to Lexington, Kentucky. Paul had just completed his BA in Austin and was working a summer roustabout job in the oilfields of west Texas before our relocation to Kentucky. 

That summer was like many before when he worked out in the hot sun, acquiring several severe sunburns on his face and chest, showing evidence that attested to his hard labor on the West Texas oil rigs. Post Script: Those sun burns were likely the cause of his melanoma cancer, according to William Robinson, MD, The University of Colorado Medical Center. The melanoma found in 1983 eventually killed Paul in 1986. 

 Paul, Bess and I were watching television, that exciting, momentous event of the landing of the Apollo on the moon. It was in the heat of that July summer in 1969 when all things seemed possible to me, and only a few minutes before the words of Neil Armstrong were spoken to the world when he declared “that's one small step for man; one giant leap for mankind.” All the world was astounded at this accomplishment except for a few who thought that perhaps this was some sort of a conspiracy theory concocted about “a man on the moon.” Bess was actually one of those non-believers, although it was much later that Paul told me she thought it was just a media blitz, that man on the moon.

Bess was born before 1920 and had lived with her mother and sister in a fatherless home. These three endured the Depression Years and it showed in how she so sparingly lived. Having grown up to be thrifty, Bess saved plastic Wonder Bread bags, used tin foil, and coupons of any nature if a few cents might be saved off list price. She judiciously pasted green stamps into the little S&H books, looking forward to what her stamps might be traded for at the S&H center on 8th Avenue in Odessa. Pots and pans, comforters, sheets, and other mostly household items necessary for homemaking, all could be had for exchange of her neatly filled green stamp books, carefully hoarded until redemption.

Bess was tidy and organized, a proficient housewife, a good cook, and generous in her frugal own ways. Her fried chicken, mashed potatoes and thick cream gravy, heavy with black pepper, were some of my favorite dishes. I generally kept out of her way when she cooked and while she watched her television soap operas on weekday afternoons. Bess entered contests, all kinds of give-aways, clipping notices from magazines and newspapers, filling out the forms and hand lettering the envelopes. She did this every day over probably a five year time period; her grandest prize winnings were a washing machine/dryer set and a new car.

Summer passed, and Paul and I moved on to Lexington in late August, taking two days to drive there in our '62 Chevy coupe, pulling a U-Haul trailer holding a few of our belongings. We must have looked like itinerants from The Grapes of Wrath as we slowly wended across country, our typewriter, clothing and boxes piled high on the back seat of the old Chevy.

We rented an upstairs apartment in a two story house on Wabash Avenue, several miles from the university. We would have preferred living in married housing on the UK campus, but we owned a little dog, and the housing department rules barred animals from student apartments. So we settled into that one bedroom, small kitchenette apartment. I found a part-time job on campus at the university hospital and carried a full load of course work. Paul had a teaching assistantship, also working on his graduate degree. Money was tight, but this was not a new situation for the two of us. And Bess sometimes, most weeks, sent a $5 bill in her letters to Paul and me. That $5 was usually spent on hamburgers at McDonald's, and sometimes we went to a movie. Life was pretty good, as I remember.

Contraception for us in the late 60's was that of the birth control pill, a fairly high dose of estrogen used in that decade. It was only later that the negative side effects of this type high estrogen pill were announced. At my doctor's appointment the prior year, I had been warned to quit taking the pill for a three month time period after a year of use. It was a standard recommendation then to give the female body a break from constant use of estrogen. So I quit taking the pill after the requisite time period and relied on other less effective forms of contraception.

We drove down to Texas for the Christmas break, visiting all our family. The school break lasted about three weeks and I recall not feeling well on the drive back to Kentucky after the holiday school break, thinking maybe I had a touch of flu that was going around that season. It was months later that I determined that little sick spell was actually probably morning sickness.

In the spring, after having felt ill for a number of weeks and having gone to the student clinic yet again, a pregnancy test showed positive. Paul and I had never discussed having children, not even prior to our getting married. I was 20, he was 23, and the possibility of becoming parents had not been considered by either of us. And I had always used contraceptive measures, so it was a moot point to discuss children at this stage of our lives, or so we thought. Completing our respective educations was the priority then.

It was while I was at my part time job when I received the phone call from the student clinic and was told that the blood test taken to determine pregnancy had come back as positive. How could this pregnancy have happened? Upon hearing this news, I was dumbfounded, devastated. I believed I could not continue with my education now that I was going to be a mother.

These thoughts were running amok in my head as I finished my work shift and drove back to our apartment in the chilly spring air. Steering down the curving street toward home with tears in my eyes, I felt desolate at receiving this news of an unwanted pregnancy. How would Paul react when I told him I was pregnant? I was so unhappy about this situation, crying and praying for a sign that I could get through this ordeal, give birth to a baby, become a mother, and that my schooling was not ending. 

It was then I noticed a bird, flying just to the left of my driver's side window. It was perhaps twenty feet away, flying toward the west, and it had a blue breast. I took it as a sign that all would be well and was shored up by this sighting of a “bluebird of happiness.” It was a sign I have never forgotten. This sign, a bird in flight, touched me in a place of deep despair, giving me consolation. 

That next school semester continued, with little difference in my life other than an expanding waist line and the continuing pregnancy. Paul did not say much about the impending birth of a baby, or the pregnancy, but I knew he was worried about what the next year would bring. His draft number was to be called up within the next month after his graduation, at the simultaneous time of expected birth. I fretted about his being drafted and dreaded the time when I knew we were soon to be separated. Anticipating being a new mother, I was not looking forward to having the baby in his absence. 

It was the late summer of 1970, the war in Viet Nam was in full swing and Paul's draft number was scheduled to be called soon after his graduate school status extension ended in August. Jane Fonda railed against the soldiers, men were drafted or volunteered into the armed services, death tolls were counted on the Viet Nam front as the year rolled on. Returning soldiers were not welcomed home, PTSD was not recognized or treated, and draft dodgers went into exile in Canada or elsewhere. He assumed his fate was settled after he was drafted, at least for those next two years as he served his time in the Army. 

We made tentative plans for the year after the baby was scheduled to arrive and while he would most likely be in Viet Nam. My parents had divorced in 1965.  I was to go back to Texas and live with my father in the Ft. Worth area where he was then working. Dad was selling and renovating houses, and I planned on living there with him and the baby. Living with Mother was not an option because she had a one bedroom apartment and also had a part time position as a house sitter and companion to Mrs. David Tandy, whose husband was the founder of Tandy Leather Company in Ft. Worth, Texas. I never even thought about living with Bess after the birth of the infant, although that might have been an option also. 

But none of those scenarios occurred, and those tentative plans were never put in place. In September of 1970, a month after the baby was supposed to have been born, calculations made by the “best OB in Lexington,” that our baby came into the world after just a few hours of labor at the Albert B. Chandler Medical Center on the campus of UK. 

I knew only a minute or so after she was born that something was wrong with my baby. She made a little cry as the nurse was taking her to another area in the delivery room, away from me. I asked the sex of the baby and if the baby was healthy. No one said anything for a minute, so I continued asking. I was told the baby was a girl, and that they would talk to me about her as soon as they could. A few minutes later a doctor already there in the delivery room said there was something wrong with her back, but she was breathing fine. He came over to me and said he would call in another physician to talk with me. His demeanor said it all: downcast, and with a broken voice. That was when I knew something was wrong, very wrong with the baby, that child I had never even asked for.

A nurse must have transported the baby to another unit, because I did not get to see her until a day after her birth. My feeling were of guilt, guilt that I had done something wrong during the pregnancy, and guilt that I had not wanted a child. (I chewed on that guilt for many years, its taste creating a villus bile that often set me on edge when I would see a child without defect, a product of lucky benevolence.) 

A specialist came in to talk with me in the recovery room and explained that our baby had a birth defect termed “spina bifida with myelomeningocele.” I could not comprehend at first what he was saying. I expected a baby, yes, but not one with problems needing specialized care. I had never before heard the term “spina bifida.” The doctor went on to say she would likely also develop hydrocephalus. I was heartsick, because I did understand the ramifications of the anachonistric term “pumpkin head,” because I had attended first grade with a child who had a brother at home, shut away with untreated hydrocephalus. (See Chapter on "Shunts")

Here is a brief definition of the birth defect from
The term spina bifida comes from Latin and literally means "split" or "open" spine. This defect happens at the end of the first month of pregnancy, when a baby's spine and spinal cord (a bundle of nerves that runs down the center of the spine) are developing. The nerves that branch out of the spinal cord may be damaged.
Sometimes, the defect causes an opening in the back, which is visible. The spinal cord and its coverings sometimes push through this opening. Other times, there is no opening and the defect remains hidden under the skin.
Depending on the severity of the defect and where it is on the spine, symptoms vary. Mild defects may cause few or no problems, while more severe defects can cause serious problems, including weakness, loss of bladder control, or paralysis. Children with an exposed opening on the back will need surgery to close it.
Hydrocephalus occurs in 95% of children whose back is closed closed by surgery.
We named the baby Juliet Parke. Julie's meningocele, the worst form of spina bifida, was closed when she was four hours old, and a ventriculo-atrial (VA) shunt (See Chapter on “The Shunts” for more detail) was placed in her skull on her fourth day of life to ameliorate the effects of hydrocephalus. Surgeries were performed by Gordon Brocklehurst, MD, a renown neurosurgeon from the United Kingdom who had recently started a specialized unit at the Chandler Medical Center for infants born with spina bifida. He was one of the few surgeons around, certainly in Kentucky, that performed the specialized neural tube defect repair surgeries necessary for sustaining life of infants born with this birth defect. 

At the time of Juliet's birth, one in one thousand babies was born with spina bifida. We felt fortunate Julie was born at this teaching university hospital with state of the art care available. During the '90,s the Spina Bifida Association lobbied the government to require supplemental folic acid be added into foods supplied to the U.S. because folic acid in the diet of pregnant women was found to greatly reduce the incidence of neural tube defects. (See “Resources” appendix). 

 Beginning in 1996 the U.S. Food and Drug Administration (FDA) began to require that folic acid be added to specific flours, bread and other grains, fortified because they were staple products for most of the U.S. population. If only I had known prior to pregnancy to supplement my diet with folic acid, perhaps all our lives would have been different. 

After Julie's initial surgeries were completed, we brought her back to our upstairs apartment in Lexington. Paul spent time and efforts getting a hardship deferment from the Army, which was granted in due course after Dr. Brocklehurst had written a letter on his behalf requesting a deferment from active service due to the fact he was needed at home to help care for a handicapped child. Then Paul began looking for a job teaching at the college level and relatively quickly acquired an assignment at Lamar State University (LSU) in Beaumont, Texas for the term beginning in 1971. 

Our beloved little dog was extremely jealous of Julie, and jumped on her a few days after we brought her home. We subsequently had to find another home for the dog because I was fearful of further damage to our baby.  Upon reflection, the sorrow of giving up our pup almost surmounted that of having birthed a handicapped child. Or was it a transference of sorrow, a trade off of a happy and loved animal for the acceptance of a new human life with seemingly insurmountable problems?  This trade off was difficult for me as a young woman with few life skills under her belt.

In December of 1970, we moved to Beaumont and Paul began his new job teaching sociology at LSU. Julie had one shunt malfunction and subsequent revision while we lived in Beaumont. At six months of age, her eyes looked “buggy” and her fontanels bulged upwards. Her shunt was repaired in a straightforward manner with no ill effects. I thought then that a shunt revision would result in her death. I have no idea where that idea came from, but I had no experience whatsoever in children with hydrocephalus, and I knew it was a risky deal having that shunt reconfigured by a neurosurgeon. Just the word “neurosurgeon” was enough to put panic in my soul! 

A new AV shunt (see chapter on “The Shunts” for further information) was placed in her skull, and the bulging fontanels diminished in size within the first day after revision. She came home, back to her crib, after just a week in hospital.

We stayed at LSU two years while he taught and I finished my sophomore year of college at LSU at nights and in the late afternoons while he provided care for Julie. Julie had physical therapy twice a week, and I also worked with her daily on muscle coordination exercises. The cockroaches in Beaumont were so invasive that our apartment was sprayed monthly. They were not only invasive, they were as large as a small mouse, or so I thought. I kept careful watch on Julie, daring the roaches to rear their ugly heads.

In the summer of 1972, Julie spent a week with Bess in Odessa, just the two of them being a grandmother and grandchild together. My father-in-law worked out of Barrow, Alaska on the oil pipeline for about ten years but was not back in Odessa at the time of their grandchild's visit. It was the first time Julie had been out of my care and I was relieved to have some portion of my life not involved with either being a full-time mother, or as a part-time therapist for her. I recall feeling a bit guilty about this new-found, week long freedom, but it quickly passed, as ephemeral as a cloud in the sky moving on. I was worried Julie's shunt would malfunction and Bess would not know what to do for her. But the week with her grandmother passed without incident, and we drove back to Odessa to retrieve a thriving Julie, none the worse for wear. 

Julie began saying words at the appropriate age and followed most guidelines for normal development, other than her legs did not function normally.

By the time we moved from Beaumont in 1973 and into our first married housing apartment in Lansing, Michigan, Julie had learned to crawl in a rather odd manner. She used her forearms to propel herself across the floor, making each movement in a deliberate pattern on one elbow in front, pulling herself forward, then taking the opposite elbow forward, pulling the other side of the body forward. We termed it the “alligator crawl.” This move was learned in her twice weekly therapy sessions. I also worked with her daily on strength training and balance, and she became stronger and faster at pulling herself forward on the floor.

In Michigan, in 1974, Julie began a half day session for children with developmental delays and was bused in a little white van to an older building, Walnut Elementary School, half way across town. At four, she liked her school and her therapists and teachers. Julie carried her disposable diapers in a cloth bag with her special stuffed animals each day of the bus. (Spina bifida results in loss of bowel and bladder control, so she was diapered for the first five years of her life; she learned to put on her own diapers by the time she was three.)

Julie began socializing more with other children at Walnut Elementary, received physical therapy there, and I helped start a support group for parents who had children with spina bifida. In this group, we shared developmental milestones of our children, and both the kids and parents benefited from being with others of like minds with similar problems. If only I had been able to find such a supportive avenue when she was an infant.

In Montana, in 1975-1977, Paul had finished his PhD and was working for the Federal Goverment. Here is where Julie spent two years in kindergarten, repeating the class a second time because she needed that extra socialization and general time to “catch up.” Or that was the thinking back then. She again carried her diapers with her the first year of kindergarten, but by the time she was just under six years of age, she had learned to independently catheterize herself every four hours in the teacher's bathroom, where she was afforded more privacy. 

Julie catheterized herself with a six inch transparent glass catheter, and I still cringe to think of the safety factors involved with glass in the urethra. But in the 70's, plastic catheters were not in use, especially for children. The glass catheters could be used for a day, every four hours, and then boiled and kept in alcohol until needed. We usually had a supply of four or five boiled glass catheters on hand. It was only in the 1980's that disposable catheters came into common use. (See Chapter “Catheterization” for more information) Julie continued tohave issues with bowel and bladder control.

 Urological advances, and further problem progression in this area led to further surgeries and ostomies for both bowel and bladder.

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