Tuesday, November 27, 2012

Jane Marie, My Second Born - Carol, 70

She had a full head of dark hair and was such a pretty baby.  I have never forgotten her profile, but I never thought to take a picture of her.  I didn’t think to do many things, and when I look back on it I realize what a young 24-year old I was.  I know the first time I saw her I was by myself.  I left the ward I was in with all of those mothers who received their babies in their arms throughout the day and walked down the hall to see my baby in an incubator.  She was hooked up to oxygen and multiple tubes and fluids and was so fragile and small.  The only sounds were from the machines that were attached to her.  She was born with all of her internal organs outside of her body, and she had no stomach covering.  I don’t remember who told me of her condition or when I knew there was a problem. 

She was born August 8, 1966, and I do know that during the surgery immediately after her birth, there was no way to place all of her organs into her stomach cavity, and three-quarters of her intestines had to be surgically removed to enable everything to fit.  I don’t remember what else they told me, but I do remember that. 
When I was released from the hospital and my baby remained behind, I couldn’t get back to see her unless someone drove me there.  One of my many fears at that time was of driving in traffic, and almost always it was my mother who drove me to Bloomfield.       

During some of my visits, I did touch her through the hand holes in the incubator where she lived.  Very rarely and very cautiously, but I did touch her.  On one wonderful occasion, a kind nurse was caring for her and cleaning her up, and she asked me to sit down.  She then placed my baby in my arms for several minutes.  I was so frightened that I would hurt her, and I held her so carefully.  I couldn’t even hug her.  I could only look at her face and try to remember each detail.  I was wearing a reddish-pink paisley print sun dress that I had sewn with big buttons at each shoulder.  I saved that dress, because that was my one physical connection to my second born.  She or some of the tubes leaked fluid on me, and that was the only part of her I ever retained.  Though I washed the dress, I could never bring myself to throw it away until a few short years ago.  Even then, I cut out a square of fabric and put it aside. 

But she never got to wear the little flannel kimonos that I made for her and trimmed in cotton seam binding.  At the hospital she only wore tiny diapers that appeared to be made from wash cloths.  I thought she deserved better than that, but her overall care at that hospital was not what I would have wanted.  It certainly wasn’t anything like a Neo-Natal Intensive Care Unit is today.  I watched a nurse touch a rubber nipple with her bare, unwashed hands, and then put that nipple directly into my baby’s mouth.  I didn’t make her stop, and I don’t know why.  That was my baby, and I should have protected her. 

My three-year old son was being watched by his aunt at her home across the river.  He stayed with her for two weeks.  To discipline him, she put a plastic bucket on his head and placed him in a closet.  Maybe she told me about that because she knew I would insist that his father make the trip across the river and bring him home.  Maybe she really didn’t know it was wrong.  Whatever the reason, my son had to come home right then; though I don’t know what I told him about the baby, or if he even knew of her while she was still living.  

During the weeks that my son wasn’t home, my mother and I could go to the hospital in the evenings, but once he was back I had no one to watch him.  My sister was living in Philadelphia, and I don’t think my father and husband were home much.  If my mother drove me, there was no one else to babysit.  I didn’t know what to do about getting to the hospital, and I had no other support system - just my mother.  She and I were in this together.  We didn’t do well, but we were a team, and she was my Rock of Gibraltar.   

I felt responsible for my baby’s birth defect because of something I did.  In what I considered my first three months of pregnancy, I had caught a terrible cold.  My body was wracked with coughing and these spasms were straining my stomach to the point that I was concerned for my baby’s welfare.  One night the coughing was so severe that I got out of bed, stood at the white metal medicine cabinet in the bathroom, and made the decision to take out a bottle of Vicks cough syrup and swallow a spoonful.  I carried the guilt of that decision for many decades afterwards.  I was her mother, I should have known better.

On one of our trips to the hospital, my mother said to me, “Maybe it was something I did that caused this.”  We were driving along wrapped in our own guilt, both hurt and scared.  We could not change the situation that we so earnestly wanted to fix, and we didn’t know what to do with our feelings or how to help each other.  But like I was Jane Marie’s mother, she was my mother, and she tried so hard. 

Jane Marie struggled for her life.  I knew she was in pain, even though the nurses tried to assure me that she wasn’t.  I didn’t believe it, and didn’t know why they would say that.  It didn’t make me feel better, and it certainly didn’t make her feel better.  I could tell what she felt when she drew her tiny legs up and cried.  This was my child, and there was nothing I could do to help her. 

For a long time after my baby’s birth and even longer after her death, I would wake up each morning with a feeling of impending doom.  When I wasn’t quite awake, I somehow knew there was a terrible thing in the back of my mind that I needed to remember, but it would take me several seconds to grasp what it was.  I dreaded that waking-up period, and I hated remembering what was wrong. 

Initially, she was in a room with other babies with medical problems or birth defects.  One little boy had a cleft palate and a hare lip.  His unwed mother had planned to give him up for adoption, but when he was born with these defects and she spent time with him, the lovely young woman with such a ladylike manner made the decision to keep him.  He had a full head of long, brown hair that stuck straight up, and he was darling.  His mother was concerned because her parents were not supportive of her new decision.  I sometimes think of that mother and child and fervently hope that it all worked out.
The parents of the children in this small ward could freely walk in and out of this grouping of already harmed babies.  The access and lack of cleanliness, in retrospect, were appalling.  I can recall a blood spill on the floor beside my baby’s incubator that was carelessly wiped up and left as a darkened smear.  I never mentioned it.  I should have spoken up. 

They were not equipped to deal with a child with the level of injury that my baby had, and I don’t recall ever meeting or talking with a doctor during my evening visits.  The majority of the information I received came through the nursing staff, and when I was not at the hospital, I would call them daily to get updated information. 

During my visits, one of the nurses told me that Jane Marie was going to be a piano player because of her long, narrow fingers.  I have always loved babies’ fingers and toes, and this nurse’s comments were the only normal conversations I had about my baby.  I should have been able to hold her and kiss her little neck and the top of her head, but I wasn’t ever able to do that.

One night at home, I received a call from one of the nurses.  She told me that the doctor was rushing my baby to surgery, and they were concerned, as they had previously told me that she would not be able to survive another operation.  The nurse stressed that I needed to get there as soon as possible. 

I hung up the phone and went into the bedroom to wake up my husband.  I told him that we had to get to the hospital, and I explained the urgency of what I had been told.  He responded, “I can’t go.  I can’t let Ruth down.”  Ruth was his boss, and he was talking about his job.  I said, “You don’t understand, we have to get to the hospital.  Now.”  He again repeated, “I can’t let Ruth down.”  I didn’t understand what he was telling me, and I certainly didn’t understand why.

I broke down crying and eventually screamed that we had to get going.  I was so worked up that I have no recollection of what happened next or if he went to the hospital with me at all.  What I do know is that I never forgave him for his lack of love for my child.

I don’t know how I got there, but when I arrived at the hospital, a minister was baptizing the baby in the hallway on her way to surgery.  I was relieved; I had been concerned about ensuring she received this sacrament.  I don’t remember if I made the arrangements or if my mother or the nurse who called might have helped.  I just know it was important.

My mother was with me when the surgeon came out to talk to us afterwards.  I know he spoke of gangrene, but I have no recollection of the other things he said.  If there was anyone else there, I don’t recall.  I must have asked questions.  I hope I asked questions.  She did survive.  My baby tried so hard.

At some point after the second surgery, when I went to visit, she wasn’t in her corner spot in the ward.  She had been moved to a small dark room off a hallway, away from the rest of the babies.  It appeared to be more of a closet than a hospital room, except for the glass panels in the upper half of one wall.  The desolate room only added to my feeling that everything was so wrong.  I don’t know when she lost her hair.  They may have shaved it off before the second surgery or maybe before that.  There were so many tubes taped to her head, and I didn’t know what was happening.

Over Labor Day weekend when my brother was home, he went with me to see her.  He was trained as a veterinarian, and he looked at her and said, “She has a staph infection, and she’s been isolated from the other babies so it doesn’t spread.”  No one at the hospital had told me.  They said it would be better if she was in a room by herself, but they never talked about the sores that had developed on her body.  I was aware that her condition had deteriorated, but I may not have wanted to ask the necessary questions.  Anyway, I didn’t get many answers, and the ones I got didn’t seem to be accurate.  Maybe that’s why I didn’t ask questions - or maybe it was because I didn’t know how to ask, or I didn’t feel I had the right to ask.  After all, I had a lifetime of learning not to rock the boat. 

The last time I saw her I immediately knew there was something different.  When I walked into her small room it was quiet.  Someone had disconnected all of the tubes and machinery and oxygen that had been attached to her small body.  The sounds that had surrounded her life were gone.  I didn’t break the silence.  I stood there quietly, absorbing the decision that the doctors had made without me.  They did that back then.  I still said nothing.  I did not want to see her in pain any longer, and I wanted her to have peace.  I prayed for her, and I was prepared, and I knew that it would not be long. 

I must have said goodbye to her then.  I don’t remember.

On the evening of September 7, 1966, the surgeon called me at home.  He abruptly told me, “I’m very sorry, but your baby has passed away.  She bled to death from the sores on her body.”  I don’t know what I said.    She had tried so hard for the month she was living.

I received a follow-up phone call from a doctor who asked permission to perform an autopsy.  I hastily gave it, and he seemed surprised by my quick response.  I think he asked me again, and I repeated my decision.  I wanted her life to mean something, and I was hopeful that what they found might help the doctors or another child who was struggling.  

I contacted Burket’s Funeral Home regarding the arrangements.  Mr. Burket picked Jane Marie up at the hospital, and she was placed in a small, white Styrofoam casket, but I did not see her after my last trip to the hospital.  My mother and I went to the children’s store on the main street in Oakmont and bought a special blanket to wrap her in.  I always thought I would remember what it looked like, but now I don’t.  I know it was beautiful and soft and that I cried while I was making the purchase. 

I don’t remember what day she was buried, but I do know that my lovely mother-in-law stopped at a florist shop down street and bought a half-dozen long-stemmed red roses loosely tied with a dark red ribbon.  At our house, as I watched her struggle to get out of the car with her gnarled hands and crippled feet so badly affected by arthritis, I was deeply moved by her thoughtfulness and effort.  Those flowers were absolutely necessary for the funeral, and she was the only one who somehow knew that. 

Reverend Smith of the Oakmont Methodist Church performed the graveside service at the cemetery in Penn Hills.  My mother and my mother-in-law were there beside me, and I don’t know who else attended or who was watching my son.  I am assuming my husband was there, but I don’t remember him.  My siblings had returned to Philadelphia prior to her death, so they couldn’t attend.  The little white casket sat on the ground, with Ma’s bouquet of roses lying on top.  They were the only beautiful part of such a sad day, and it wouldn’t have been right without them. 

I had requested that my grandfather’s grave be opened and that my baby be placed with him, but the instructions were somehow misunderstood and my grandmother’s grave was opened instead.  I accepted that, without comment, along with the other errors that surrounded her life and her death, and my baby was buried with my mother’s mother.  

When the autopsy report was mailed to me, it stated that her gall bladder was in her liver, and she had a heart defect.  While it said that she died of pneumonia, I know that wasn’t true, because the surgeon told me that she had bled to death.  She may have had pneumonia also, but even the final piece of paper wasn’t accurate.  Somewhere in the house that envelope and piece of paper have been hidden away.  I came across it once or twice in the last 46 years, and each time I managed to hide it away somewhere better.  I don’t think I’ll ever be able to find it again. 

I know that Len Burket never submitted a bill to me for the expenses.  It was six months or a year later when I called him to remind him that I owed him money.  He sent me a bill for $50, and I paid it immediately.  I have never forgotten his kindnesses.

One of the men down at the filling station at the corner of Allegheny and Delaware Avenues said to my dad, “Nothing bothers your daughter, does it?”  This was right after the baby’s death, and I guess I didn’t show the pain on my face.  Maybe my father told me this because he couldn’t see my pain either.  I wanted to walk up to that man at the gas station and say, “Everything bothers me,” but I knew that somehow I had developed a mask that didn’t show the pain I was in.  I had years of practice.

As I look back on it now, I am overwhelmed by the difficulties that surrounded my baby’s time in the womb and in this world.  Somehow my child and I were caught up in a set of circumstances that couldn’t be made right.  I was her mother.  I would have tried harder, if I had known better.    

For many years I harbored a terrible feeling about the hospital and everything it represented.  I know there were not proper procedures taken to ensure that she was safe, but there were many improprieties besides lack of cleanliness.  I also know if she had survived she would have had many problems that were almost insurmountable. 
When I was making the funeral arrangements, my husband told me he had ordered a plaque to put on the baby’s grave, so I made no other arrangements to mark her burial site.  Time passed and he assured me repeatedly that it was due to arrive.  It was more than 25 years later and long after he was gone from my home when I finally ordered a bronze plaque and had it placed on her grave in front of my grandmother’s headstone.  Even that simple act of remembrance had become part of the errors surrounding her birth and her life. 

The Christmas after Jane Marie was born, when I was shopping down street at Murphy’s 5 & 10, I saw a paper angel tree topper that cost 79 cents.  I immediately bought her, as I felt she was the perfect addition to our holiday.  Now 46 years later, even though I keep her in the box with the cellophane window that she had when she was new, her gold wings have somehow gotten a little bent and crumpled, but she has always remained in her place of honor every year.  I am so careful with her, and I touch her as little as possible to prevent any additional harm, but I haven’t been able to prevent some damage.  However, when I place her on top of the tree each year, I feel content that my baby’s presence is visible within our family. 

All I have of my baby is the memory of her profile, that priceless paper angel, and my small scrap of material.  I also have the tears I have shed telling her story.   

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