PreNatal Screenings' False Positives

Today I saw an article that brought back a memory.  It was from the Daily Skimm and originally appeared on Good Morning America: https://abcnews.go.com/GMA/Wellness/fda-issues-warning-false-results-prenatal-genetic-screening/story?id=84187322 Basically, the article was about how genetic screenings can produce false positive results, possibly scaring the parents into making decisions they don’t need to make.  This is the memory that came back:

I was 33 the year I was pregnant with my middle child, my daughter Heidi.  I was completely flummoxed when my obstetrical practice told me I was considered “high risk”.  I was almost five months pregnant when they wanted to do a screening test to see if the baby might have spina bifida.  I agreed to it, thinking this way my husband and I would be prepared for any difficulties at birth.

It came back a false positive.  Now I was counseled to go have an ultrasound so that Rich and I could make an “informed decision.”  Rich had been going to Johns Hopkins in Baltimore since receiving a diagnosis of congestive heart failure due to Marfan Syndrome, and that's where we decided to go.

I called Hopkins to make the appointment, well aware of what was implied by “informed decision.”  The scheduler wanted to bring me in right away and I said no.  She said, “But you need to come in soon.  You can’t delay.”  I assured her there was no hurry and asked to be scheduled when I was almost 7 months pregnant.

She protested again.  “But that’s too late.”

“No, it’s not,” I answered.  “I don’t want an abortion.”  The history on that:  during my first pregnancy, we had a scare.  Afraid that I might lose the baby because I was bleeding, I had an ultrasound.  At the time I was about six or eight weeks pregnant.  On the screen, I saw the tiny fetus and then was startled to see pulsing.  I asked what it was and the tech said, “That’s your baby’s heart beating.”   

Rich and I had both discussed the false positive and decided we wanted this baby in spite of any possible disabilities.  After all, the baby might also have Marfan or might be deaf.  Well, that didn’t sit well.  The scheduler asked if I wanted to speak to a genetic counselor and I said, “NO.”

But what if the baby was born with spina bifida, with the spinal cord protruding and other scenes of horror?  She scared me, but I said, if that’s the case, there will be doctors right there to help the baby.  I was a nervous wreck and cried and cried when I finally got the appointment I wanted.

I went for the ultrasound, still a complete wreck, and accompanied by Rich, who was totally supportive and reassuring.  We decided after all the hell we were going through, we deserved to know if our baby was a boy or a girl.  We’d been going round and round on boys’ names but had easily decided on a girl’s, Heidi Marie.

We had to wait several weeks for the results.  There were two pieces of wonderful news:

1.      The baby did NOT have spina bifida at all.  The screener brought back a FALSE positive

2.     The baby was a girl!

How we celebrated, especially that we didn’t allow any of the medical professionals to influence our “informed decision.”

If you are expecting and have one of these tests, don’t be alarmed if a screening test comes back positive. That will happen almost all the time.  An ultrasound will tell what to expect and then you must make your own “informed decision.”  No judgements from me on what that would be.  I have my beliefs, every woman has her own.

I was 36 when I became pregnant with my youngest child.  Once again, there was that “high risk category” beating of the drum.  This time, however, I said no to the recommended spina bifida screening.  My midwife supported me while the doctors at the practice wrung their hands.

My youngest, my daughter Kristin, was perfectly healthy too.

By the way, none of the three have Marfan and they all hear perfectly well.

Prophecy Or Just A Dream?

When Grandma broke her leg, she needed round-the-clock care because of the heavy cast.  Grandpa wasn’t in good health and needed his sleep as well.  They couldn’t afford a private nurse, so Mom and my Aunt Betty split the week to take care of Grandma.  However, the week wasn’t divided equally because Aunt Betty claimed she had to be home with my younger cousin, age 7,  to get him off to school on time and be home when the kids got back from school.

Mom resented that.  I was the same age as my cousin and my younger brother had just started kindergarten.  Somehow, Aunt Betty prevailed and Mom went to stay with my grandparents Mondays through Fridays until the cast came off.  Aunt Betty took the weekends.  When she stayed at Grandma’s, Mom slept on the couch and didn’t get much sleep.

One clear memory I have from that time is how Mom finally exploded and there was a long breach between her and her sister.  Another clear one is that my dad made Pete and me peanut butter and jelly sandwiches for lunch day after day.  I grew to hate the sight of peanut butter although I’ve come to enjoy it again in my older years.

Today I had a third clear memory: Mom’s dream.  She opened up to me about that dream only twice because no one believed her at the time.  You see, she didn’t believe it was a dream.  The first time she confided in me was when we’d already moved to Baltimore and were going through some hard times. 

This is what she told me:  she was awakened from her sleep on the couch in the middle of the night.  She could see into my grandparents’ kitchen and saw a light shining in through the window.  Frightened, she thought it might be a peeping tom and started to sit up.  To her confusion, she found she couldn’t move.

Meanwhile, something came through the window and in the light, Mom saw it was a disembodied arm, hand to shoulder.  The hand was flexing into a fist, and the arm swung up and down at the elbow.  Now Mom was terrified.  She tried to scream but couldn’t as the arm came through the kitchen and into the living room.  The hand had become a closed fist and was still swinging up and down.

Whatever it was, Mom knew it was evil and that it was coming for her.  She was still unable to move or to scream but felt something building inside her body, some forceful energy.  As the fisted arm came close enough to hit her, she felt something explode out of her chest and fly up at the threat.  Suddenly, the fisted arm disappeared; she could sit up and move again.

Her belief was that her soul had fought off a demonic spirit. 

No one believed her.  I remember that part now too.  She tried to tell my grandparents, father, sister and brothers about what happened.  To a one, they all said she was just dreaming.  Something like that couldn’t be real.  She didn’t mention it again until after we’d moved to Baltimore.  I had had a question about the feud between her and my aunt.  In her telling of it, she confided about the strange dream.  She’d never had it again.

When I was a young adult and still living at home, we’d had some really hard times.  More than the financial issues were the drinking and the domestic violence.  The latter started not long after we moved to Baltimore. 

My parents found a Deaf social club and a Deaf bowling league and became members.  Every weekend, they would go to the club and every Wednesday, they bowled.  At both places, the beer flowed.  I dreaded those times because frequently they would come home completely intoxicated and fight with each other.  My father would hit her, or Mom would hit Dad.  It was brutal.

After one of those occasions, Mom had bruises on her face.  I wanted to know why she didn’t leave him.  She told me she couldn’t because she was trapped with no where to go and a curse on the family.

A curse?  What curse?

First, she said that God was angry with our family because Dad was an atheist.  That set me back a bit.  We no longer went to church but I’d never seen him say he was an atheist.  I asked, “How do you know?”

She answered it was because of that long ago dream.  It was a prophecy, she felt.  The one detail she’d never mentioned to anyone was the arm was wearing sleeve of a flannel shirt.  My dad wore flannel shirts all the time.

“It was Dad?” I was astonished and felt my stomach drop.

Yes, it was Dad.  She’d recognized it was his arm right from the first time she saw it.  She knew it meant there was a curse on our family and that my Dad had set it on us because of his atheism.

Do I believe that?  No.  After I became fluent in sign language, I learned that my father had become very bitter from all of our hard times.  If anything, he was angry with God or perhaps had become agnostic.

Thinking about it now, I can see that it was prophetic in one way.  It does seem to have been a warning that domestic violence was in the future.

 

Plattdeutsche Park

 

The news is an awful bummer but I began subscribing to another positive news newsletter.  I also focus more on the “fairer” of the newsletters, like the 1440 and the Skimm.  I read Press Run, in which the author takes on the negativity of the mainstream press toward President Biden.  I also read Reuters a lot for their impartiality.

As for why the news is generally a bummer:

1.      Ukraine.  The coverage of the carnage left behind by the retreating Russian army is truly horrifying.  President Zelensky calls it genocide and it sure seems to be, but the Western countries seem hesitant to go that far.  They do call Putin a war criminal, however.  The Russians, of course, is claiming the footage of the bodies tied with their hands behind them and left strewn on the streets are a “hoax.”  Yeah.  My lyin eyes are deceiving me.  Oh, it is so sickening.

2.     The abuse and mistreatment of Judge Ketanji Brown Jackson by the GQP.  The Rethuglicans on the Judiciary Committee practically pranced about, shouting “We are racists!”  There’s no shame anymore.  Every single one of those GQP corrupted Senators voted against the most qualified person ever to be nominated to the Supreme Court.  She far outshines trump nominees and yet she was mocked and interrupted by the thugs during the hearings.  And every single one toe stepped to the “no female blacks on the Supreme Court.”  And while the hearings were going on, the Chair, Sen. Dick Durbin, a Democrat, didn’t object once to Jackson’s mistreatment.  The only one to defend her was Senator Cory Booker from New Jersey.

3.     The GQP continues to flagrantly break the law and get away with it.  Those of us who believe in law and order are thoroughly depressed by the lack of consequences for the higher up law breakers.

 

In more positive news today, I saw on the Long Island paper, Nassau Daily Voice, that the Plattedeutsche Park restaurant was voted the best German restaurant on Long Island.  I so remember the Plattedeutsche well and very fondly. 

 

I went there when I was first dating Rich.  His parents, grandparents and all his relatives were of German heritage so the Plattedeutsche was like a second home to them.  Every year, the Park had Volks’ Fests and Oompah Fests.  They were so much fun!  There were games for the children to play; delicious bratwursts, knockwursts, hot dogs and potato pancakes to stuff a hungry self on; a loud, lively Oompah band and lots of dancing, drinking and singing.  Every once in a while, folks would form a parade and march around the park.  The fests were always packed and always filled with “gemütlichkeit”.

 

I’d taken German in junior high and high school but had forgotten most of it by the time I began dating Rich.  I didn’t know what “gemütlichkeit” was and asked his grandmother.  She answered that it wasn’t a real word but a combination of ideas conveying that everyone was experiencing good feelings together.  Happy camaraderie.  That certainly defined the spirit at the fests.

 

On special occasions, we’d always eat at the Plattedeutsche.  This is where I learned to truly appreciate German food.  I’d grown up with American/Irish meals and so I really enjoyed dishes like rouladen, sauerbraten, schnitzel, apfelkuchen, and many others.   Family birthday parties and gatherings were always held in a private dining room at the Plattedeutsche.  We stuffed ourselves.

Throughout our marriage, Rich and I went to the Plattdeutsche every year we lived in New York.  When we moved to Maryland, we’d travel to Franklin Square to meet up with family to celebrate Oma’s birthday.  Oma is German for grandma and that is what Rich’s grandmother was called.  After Rich passed away in 2001, I went with our children to the Folks’ Fest.  We couldn’t stay as long as we used to; it was too painful. 

 

Now, twenty years later, all I remember is the good times and the great food!  

 

Joyce

One night, in 1975 or 76, Pastor Joe and I found ourselves in the apartment of a deaf couple trying to convince their teenage daughter not to kill herself.

Codas, which is what Joyce and I are, have a unique set of experiences and problems. Codas are children of deaf adults. Coda is also a musical term. It's a part of the piece that brings the music to a close, the same and yet different from the whole. And that's what codas are. We're like everyone else in the hearing world and yet we are also different.

I got to know Joyce while I was volunteering at the church for the deaf. At the time, Joyce was one of only 2 members of the whole family who could hear. Her parents, aunt, uncle, sister, brother-in-law, niece and cousins were all deaf. Her father was also an alcoholic who beat her, her sister (before she married) and her mother. Joyce was "grown up" for her years because of being the family interpreter. A kid with alcoholic abusive parents can be troubled. Add on deaf parents who relied on their kid heavily to make decisions and you have a mess.

I used to talk to her after church service. She was rougher and more "street-wise" than me but I recognized the lost, hurt child within.  When I reached out to her, she grabbed on hard.  It was as if she was drowning and needed someone to pull her out.  She invited me to stay overnight with her one Saturday night and then we could go to church in the morning.

I noticed how quiet it was in the apartment.  Her parents didn’t use their voices at all.  They asked me dozens of questions I artfully dodged.  Joyce resented their attention and finally blurted in sign, “She’s here to talk to me not you!”  They looked shocked.

Joyce had many of her own questions.  “Did you ever kiss a guy?  What does it feel like?”

“It’s really nice if he knows how,” I answered, describing the perfect kiss.

“I wonder what it feels like to make love?”  She wondered.

I had no idea.  This was getting out my league.  I hated to admit I was totally inexperienced there but I also didn’t want to make up a story.  Everything I knew about making love had come out of a paperback book called <u>Everything You Always Wanted to Know About Sex But Were Afraid to Ask</u>.  “I can tell you what I’ve read,” I offered, feeling totally inadequate.

She was curious and so I told her.  “I wonder if it hurts a lot the first time?”

I wondered how we could get off this topic.  “It does the first time,” I answered and then managed to change the subject.

“I hate my parents,” she confided suddenly.  “They won’t ever leave me alone.  They always want me to do something for them.  Call this one, call that one, interpret this TV show.  I hate it!  I want to be with my friends and have a good time!”

I could definitely understand that!  There is a lot of pressure on codas to give up their own time and postpone things they wanted to do so that they could “help” their parents.  Helping not only meant interpreting, it meant being involved in making an important decision.  Our deaf parents reasoned that their hearing children would know what to do. 

“Please don’t tell my parents what I said,” Joyce begged.

“Don’t worry.  You can tell me anything and I won’t tell, “ I assured her.  I soon would regret my promise.  I understood why she was worried, though.  Codas are expected to keep family information to themselves.

So I would invite her to come and stay with me and we'd go out to the movies or something.

She ran away one night and was on the road for about 6 weeks. Her parents were distraught and I was worried.  She called out of the blue to say she was on her way back.  Rev. Buddy asked me to talk to her because she refused to speak with him.  I got Joyce alone and, tearfully, she recounted how she and a friend had begun hitchhiking their way south.  They were eventually picked up by two men in Georgia who held them and raped them repeatedly.  She’d experienced so much trauma and couldn’t bring herself to talk to anyone.  I listened, holding her and not knowing what to say.
     When she came back, I began going to movies and to dinner with her again. I don't know what I thought I was doing. She was only 13 or 14 and I was almost six years older. I liked her and I wanted to help her. I guess that being the "hero" in the family kind of set me up for that, always wanting to make things right. I didn't want Joyce to have a life of anger, depression, frustration. It didn't matter that she wasn't a relative. The point is that we were both codas and she was hurting and I wanted to help.
     She called one night while Pastor Joe was visiting. She was distraught and angry and wanted to kill herself. It scared me. Luckily Joe was there and he said to tell her we'd be there in just a few minutes. Joyce wasn't so sure she wanted Joe coming over but I didn't have any transportation otherwise and so she agreed.
     Joyce's mother was totally shocked to see us. There'd been some kind of altercation with the father and then Joyce locked herself in the room. The mother was signing, "What's wrong? What's going on?" and Joe was telling her that we could all talk in a few minutes. I knocked on the bedroom door and called to Joyce.
     She unlocked the door and Joe and I went into her room. She'd been crying, her eyes were wet and swollen. She sat down at a child's desk by the window, and on that desk was a razor blade. She'd been cutting herself but hadn't sliced into her wrists deeply enough yet.
     She didn't really trust Joe and so he sort of stood against the door as we talked. I could sure understand that. She cried some more and pounded her fist on the desk as she vented her anger and hatred. I mostly just listened, knowing the venom had to come out.  After awhile, she cried herself out, began to subside and seemed. I thought the crisis had passed but I was so wrong.
     All of a sudden, though, her features twisted with rage and she cried out, "I hate them, I hate them, I hate them!" And then she put her arm through the window and shattered the glass. She screamed with rage and I screamed in surprise. Rev. Joe moved fast for a big man. He grabbed Joyce in case she was thinking of putting the rest of her out the window.
     She was bleeding from half a dozen cuts, and we could see that she needed to go to the emergency room. Joyce began to fight us. She didn't want to go but then the blood began to flow more.  Rev. Joe held onto her tightly until she stopped thrashing around. 

We had to get help.  I thought Joyce's mother would faint dead away when we came out and she saw all the blood all over Joyce’s arm and tee shirt.
     We were at the emergency room almost all night. When we finally saw a doctor, he had to stitch Joyce's arm. He asked what happened and she told him bluntly. He looked at her, looked at us, and then said to just wait there while he sent another doctor down to talk to us. I had a feeling it would be a psychiatrist. I was astonished that Joyce broke the code of silence we codas were supposed to follow.  Meanwhile, Joyce fidgeted. She was tired of all of it and just wanted to go home.
     The psychiatrist came down and talked to us. Although Joyce said she didn't want to kill herself anymore, she did talk about her rage at her father and the circumstances in which she found herself. The doctor said they were going to admit her for psychiatric evaluation.

Joyce freaked all over again. She begged and pleaded with us to just let her go home. I was about to cry myself. She didn't want to hear that the doctor wanted to help her, wanted her to be safe ... and she got really mad at Joe and me. It was a nightmare. When Joyce's mother found out her daughter was admitted, she signed in exasperation, "See what you did? You always make trouble" and I thought there was going to be a fight between mother and daughter.
      I cried on the way home. Rev. Joe kept saying this was his fault; he wasn't as experienced in psychiatric counseling and he should never have gotten us into the situation that developed at Joyce's apartment. He should have called Carol, the psychiatric nurse for the deaf -- the same one who counseled my mother briefly when she attempted suicide.
     Joyce was in the hospital several weeks. We would go to visit her and she wouldn't speak to us, glowering with rage because we couldn't take her home. Some nights she'd call me, begging me to please help her get out of there.  God.

After she was released from the hospital, she wanted nothing more to do with Rev. Joe and me.  I haven't seen Joyce in years. I heard that she married a deaf guy and had a few kids. The marriage later broke up, but I can only guess why. I don't know if the counseling ever helped her. I pray that it did. Maybe being hospitalized sent her down a road of destruction but maybe it was also to salvation. I sought out counseling help as a young adult; I hope to God Joyce did too.