Saturday, February 7, 2015

Spina Bifida: Pivotal Decision

It was September, 1970.  I was twenty years old, at the end of an unplanned and unwanted pregnancy.   My then husband and I we were both students at The University of Kentucky, so the timing was not optimal to start a family. We were stone cold broke.  I was way too young to become a mother, but there I was, largely pregnant and facing birth.  

It was in a lovely time of year in Lexington with the leaves turning shades of red and orange and yellow, the horse farms looking like picture post cards.  Classes had just started for the autumn term at UK. But I had not enrolled because I was near term for the baby's birth and would have to take care of an infant.  I was resentful that I would have to interrupt my education to become a full time mother.  Having someone else care for this new baby was not an option, given the cost involved.  And I was not that heartless that I would let someone else give care to my future child.

Disliking babysitting, except for the measly money it provided while in high school, I really had never thought about being an actual mother to my own child.  In fact, up until that time, preventing pregnancy had been my only concern as it related to children.  And here I was about to give birth to a child.

At least I was married and would not be a single parent and having a child without a father. There was a measure of solace there.  

And my husband was smart, an intellectual in every sense of the word in my then rather immature way of thinking.  He had just finished his M.S. degree; he was reliable.  Even though he also believed impending fatherhood would be a hiccup in his career, he had accepted responsibility for my pregnancy and was ready to move on to his next stage of life duties.  At the time, he was about to be drafted into service by the Army because his lottery number was to be called during the next month after the completion of his graduate degree.  This was during the Viet Nam war years and he really had no other choice that to be recruited for a two year stint.  I was to live with my divorced father in Texas while my husband served his time in the Army.

Literally, we were broke. If it were not for my mother-in-law sending us a $5 bill in her letters, almost weekly, we would not have enjoyed those hamburger treats from McDonald's on Saturdays.  I had finished my half time job, twenty hours a week, the prior month.  Both he and I had worked while attending university, but now I was not bringing in any money and he was awaiting his call from the Army.  We had to borrow money from his parents while we waited for the birth of the baby.  Had it not been for my mother-in-law sending us a $5 bill in her weekly letters, we would not have been able to afford our Saturday night dates of a McDonald's hamburger or go to an occasional movie. We were living on borrowed money just waiting for that baby to come.

We both had health insurance through the university, and I had visited the student medical clinic twice previously that prior winter because of stomach issues. After exams and blood extracted to run pregnancy tests, the first time that test had turned out to be negative.  (The physical issues later turned out to be acid stomach reflux.)  So the baby's birth would be covered by our student health insurance.  This was another plus on the balance sheet, but the minuses seemed to be way offset on this mental check list. 

Let me digress a few months and go back to the time when I learned I was pregnant.

A few days after yet another visit to the university health clinic during the spring semester of 1970, I was waiting for a call back on lab results.  I was working at my part time job at the university supply center when I got the call back from the clinic saying my most recent pregnancy test was positive.  I was so naive that I had to ask "Does a positive blood test mean that I am pregnant?" The answer was definitive.  The young man on the phone did not know how to respond when I said "I can't be pregnant because I use contraception." Hemming and hawing, he assured me that indeed, lab tests confirmed my pregnancy.  

I was very upset hearing this news.  After putting that telephone receiver down I went to talk to my supervisor, Mrs. Million.  She and I had a fairly close relationship and I wanted to share this devastating news with someone right then.  Mrs. Million was probably in her fifties, a mentor for me in many ways, a strong and sweet Christian woman with grandchildren.  She told me that everything would be all right, and that lots of young married women had babies that were not in their immediate plans, but things "worked out."  She may have even patted my hand or arm, but I do remember her hugging me, giving some reassurance that my future would be "OK" and that God would take care of us.  Although I felt this was a simple platitude of concern, she did give me some confidence that I could get through this motherhood gig.

So my second semester of schooling continued, and my belly enlarged.  I remember being a little embarrassed to wear maternity clothing on campus, feeling I was both too young to be pregnant, and thinking my peers assumed I had gotten knocked up.  Summer of 1970 passed, and it passed slowly because I was due to give birth the first week of August, according to the obstetrician. But I did not give birth until the first week of September.  Obviously, the doctors were fallible in their baby due date prediction.

Finally, the birth pangs began in the early hours of September 4, 1970.  My husband and I made our way to the UK emergency room with labor well under way.  After my hospital admittance, my husband went to get breakfast, believing he had several hours before the birth.  I was so mad at him when I was almost immediately wheeled into the delivery room, and then my obstetrician was called. So neither my husband nor my regular doctor was present when I gave birth to my baby girl less than an hour after arriving at the hospital. I was angry at them both for not being there with me.  Angry and feeling sorry for myself and hurting, I was already feeling isolated.

Then a final push and my baby was born.  It was a girl.  I had really expected to have a boy.  I was happy that the waiting and the labor was over now, and I knew the sex of the baby and could now call her by the name we had chosen, Juliet Parke. We would call her Parke.  So we now had Parke and we were a family of three. My husband still had not shown up in the delivery room and I thought "but it is just the two of us," harboring a bit of resentment that he had not been with me in the delivery room.

It was only a few moments after giving birth that I knew something was wrong, because they would not let me see my baby girl.  Several people in the delivery room were behind my back and were talking in low tones.  I asked if she were breathing and assured she was, and I heard a little cry when they were cleaning her.  A nurse took her into the next room, wrapped in a warming blanket. Whomever it was that was delivering the afterbirth did not talk to me.  I asked if there was something wrong with my baby because they had not shown her to me and he only said "yes, there is a problem, but I can't really explain in detail about problems your daughter may have."  It was a bit hazy after that, but another physician came into the delivery room a short while later and said that a specialist had been called and he would be in to see me shortly. Still my husband was not there.  And my obstetrician had not shown up either.

Then I was taken to a recovery room, and after that my husband came in from his pancake and bacon hospital cafeteria breakfast he had enjoyed while I gave birth.  He had talked with a doctor outside the recovery room and said that the baby had a birth defect, something wrong with her back, and that her back was not fully closed.  What the heck did that mean, I wondered.  Neither he nor I was allowed to see our child for many hours after her birth because she was being examined.  (I finally saw her when she was two days old when she was in an incubator in the neonatal intensive care unit.  By that time, I was numbed from anxiety and too much knowledge about what might lie ahead for us.)

The physicians attending to her in those first hours after her birth at the UK Albert B. Chandler Medical Center came into my maternity ward room where I was taken a few hours after her delivery. It was late morning by that time.  The doctors, there were two, said they had come to discuss the problems our baby presented and the words "spina bifida" were said and explained.  She was born with a birth defect, called spina bifida, and it meant that her spinal column was not fused during the first weeks after conception.  This birth defect had occurred way back eight months before she was born, when I had been only pregnant for a few weeks.  I thought back to that time, about Christmas time in Texas in 1969.  What had I eaten then?  Was I sick back then?  Had I had the flu? Several times I was assured that this was not my fault and that I did not cause this defect.  We were told that this birth defect occurred in about one in one thousand live births.

Still, I had not seen my baby, Julie.  I asked if she was normal looking, "Yes, but her back has an opening in it.  It is called myelomeningocele, which means that it has a sac at the base of her spine that is protruding from her skin that holds her spinal nerves within the sac." One of these physicians then said my husband and I had to quickly make a decision: either perform medical interventions, or let nature take its course, with her death imminent within a few painful weeks or months.  Her dad and I were devastated.  Here I had not even wanted to be pregnant, and then something had gone wrong.  It was my fault, even though I had been told to the contrary.

We were then advised of many future difficulties which would inevitably occur if further surgical treatments were pursued, and with no guarantees of any success relating to her quality of life. We were told that she would be unable to walk, that she would use a wheel chair when the time came that she grew too heavy to carry, that she would not have bowel or bladder control, and that she would likely have hydrocephalus. This last piece of bad news was what I deemed the worst condition and one I was familiar with from my childhood since a neighbor's brother in first grade had “water on the brain” and was severely retarded. He did not talk and his tongue hung from his mouth.  His head was huge.  He scared me.
I remembered seeing that boy with the big head while I was a first grader.  I had seen him from a distance from the school yard playground and recalled my mother saying that it was a tragedy, and that he was just "born that way."  I was not to be afraid of him, and that it was just an accident of nature.  My mother said "poor boy."
It was about three hours after her birth that the specialists came into the post natal maternity ward and posed the question of what we wanted to do next. These “next steps” were to be answered by us, young, overwhelmed college students lacking most resources. We had never even planned on being parents, much less parents to a child with grave problems present at her birth. I was still having migraines from the epidural given to help me with her birth process, but clear thinking was requisite. Should the physicians operate now, or let nature “take its course?”

This was a true, heartfelt hour of decision making. Julie's father initially did not think we should go ahead with a surgical back closure as he knew that our future lives would be severely impacted if she were to continue to live. He was worried that he might not be able to finish his education and be prepared to teach at the university level.

But as a mother, my decision prevailed that hour when decisions had to be made, and I opted for not only the myelomeningocele surgery, but also for a shunting procedure on her brain to follow if necessary.  After discussion, my husband agreed to what we could for her, allowing necessary surgeries.

I clearly remember lying on my assigned hospital bed with another woman in the four-to-a-room maternity ward across the listening to this conversation presented by the neurosurgeon to my husband and me.  Standing around my bed were a nurse and a few teaching personnel from the medical school, with another new mother ward mate across the room. This ward mate had also given birth to a child, a healthy baby.  She had never received prenatal care and was from Appalachia; her husband told her when to expect the baby would be born by the cycles of the moon.  Brother, I thought.  She is from the back woods, no education, no medical care during her entire pregnancy, and here her sixth baby is perfectly healthy.  My baby, on the other hand, being a sophisticated young woman who tried to eat healthy while pregnant and had the best of prenatal care available in Lexington ... and my baby is damaged.   

Mrs. Appalachia overheard the entire conversation relating to our sick child.  The physicians and other personnel talked freely, with every detail about our child's future being laid out before this stranger.  I remembering thinking this was much too personal a conversation to have with a stranger listening to us.  Privacy laws were non-existent then.

I finally saw my daughter when she was two days old when she was in an incubator in the neonatal intensive care unit and after her back was repaired to the extent possible.  (Our daughter's back was surgically closed when she was four hours old.)  Her eyes began bulging, and her fontanel was enlarged by the fourth day after birth.  She was hydrocephalic, as are 95% of babies born with spina bifida.  Her first arterial ventricular shunt, a tube placed in the cranium to help recirculate cerebrospinal fluid from around the head and back to the spinal column, was placed when she was four days old.  She had a little shaved head, and the shunt worked, relieving the pressure from around her skull.  Her head went back to a normal size, with the top of the head becoming just a bit depressed in shape.  And her eyes were also back to looking more normal.  

Here is Julie at twelve days of age being held by a nurse.  This photo was taken the day she was discharged from the hospital.

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