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.

"Dry Your Eyes"

Happy Easter to all who celebrate.

This morning, I listened to music by Neil Diamond.  I heard a song I’ve not heard before on his other albums.  The song is called “Dry Your Eyes” and he apparently wrote it years ago with a member of The Band.

I found myself feeling emotional.  My first impression was that the song was about the loss of someone.  Because of the drum beat, I thought of marching feet and of a soldier.  I listened to the words, though, and realized it wasn’t that.  I got the impression this was an older person who’d perhaps lost her husband?  But there was a line that spoke of how he taught us things we never wanted to know.  I thought of Jesus.

I had to know the meaning of the song so I looked it up on Google.  I found this article https://www.thecapistranodispatch.com/life-love-50-dry-eyes-nine-year-ordeal-coming-end/ and part of it read, in part: “In 1976, Neil Diamond co-wrote the song “Dry Your Eyes,” with Robbie Robertson of The Band. Robertson was the producer of Diamond’s 1976 Beautiful Noise album, which included “Dry Your Eyes.”

Regarding the tune, the website Songfacts.com states, “In his memoir, Testimony, Robertson explained that the song was inspired by ‘how many people felt after the assassination of Martin Luther King Jr.’ Diamond played this live only once—at The Band’s farewell concert on November 25, 1976 in San Francisco.”

The lyrics state: “To that distant falling angel that descended much too soon.” I assume Dr. King is the falling angel.”

It made sense then and I see how it is about grieving the loss of Dr. King.  I also think it could mean Jesus because he also went around teaching things people didn’t necessarily want to hear.  Perhaps he could be the “falling angel” too.  They were both men Jane Goodall mentioned as having indomitable spirits.  They were kind, loving and giving.  And they died too young. 

I also read that the author of the article attended a concert and was surprised when Neil Diamond not only sang the song (it was rarely performed), pluralized angel to angels.  There have been people since Martin Luther King that I would, without doubt, say were angels on earth.

The lyrics are here but it’s best to hear it.

Dry your eyes, take your song out, it's a newborn afternoon
And if you can't recall the singer, you can still recall the tune
Dry your eyes and play it slowly, like you're marching off to war
Sing it like you know he'd want it, like we sang it once before
And from the center of the circle to the midst of the waiting crowd
If it ever be forgotten, sing it long and sing it loud
And come dry your eyes
And he taught us more about giving than we ever cared to know
But we came to find the secret and we never let it go
And it was more than being holy, oh it was less than being free
And if you can't recall the reason, can you hear the people sing?
Right through the lightning and the
Thunder, to the dark side of the moon
To that distant falling angel that descended much too soon
And come dry your eyes
Come dry your eyes

Dry your eyes, take your song out, it's a newborn afternoon
And if you can't recall the singer, you can still recall the tune
Dry your eyes and play it slowly, like you're marching off to war
Sing it like you know he'd want it, like we sang it once before
And from the center of the circle to the midst of the waiting crowd
If it ever be forgotten, sing it long and sing it loud
And come dry your eyes
And he taught us more about giving than we ever cared to know
But we came to find the secret and we never let it go
And it was more than being holy, oh it was less than being free
And if you can't recall the reason, can you hear the people sing?
Right through the lightning and the
Thunder, to the dark side of the moon
To that distant falling angel that descended much too soon
And come dry your eyes
Come dry your eyes

 

 

 

https://youtu.be/VkOtBHUNiz8

Cathy and the Wrath of God

 This is a continuation of All Mommies and Daddies are Deaf

The mud hole promised cool relief from the humid heat of a sunny July day.  Cathy knew there would be no beach today.  The car wasn’t in the driveway, and that meant Daddy was at work.  “Let’s go swimming!” she coaxed her baby brother.

“Where?”  Mikey asked, willingly.  He looked around expectantly.

“There.”  Cathy pointed to the mud hole.  She and Mikey dug the little pit the day before.  The sandy earth felt cool between their fingers.  Cathy’s friend told her if you kept digging, you’d get all the way to China.  They hadn’t gotten very far when the thunder storm interrupted them and drove them inside to safety.

Sometimes thunderstorms were a good thing although they were also scary with the dark black clouds and the bright flashes of lightening.  After the sky lit up, the heavy booming thunder shook the little cottage.  Scared as she was Cathy was fascinated with the fierce power of the storms and would stand with her little nose pressed to the window pane, watching the rain drill the ground like a bunch of arrows being shot by the merry men in a Robin Hood movie.  She hoped that this storm would bring a cooling breeze from the ocean so that Mama wouldn’t be so cranky from the sticky humidity.  This ended up being one of those stinky storms that just seemed to make everyone feel hotter.

The ground was still damp and squishy under Cathy’s feet as she sprinted to the mud hole. She was delighted to find her pail almost filled with rainwater.  The mud hole itself looked bigger, as if the driving rain had tried to dig to China too.  Mikey squatted down beside her.  He couldn’t run as fast because of that thick diaper he had to wear.  He still has accidents, Cathy thought.  He can’t wear big boy shorts because of the accidents.

“Pool?”  Mikey asked, his brows drawn together doubtfully.

 “We got to make it.  Watch.”  Cathy turned the pail of water over into the hole, almost filling it.  She stuck her foot into it.  Ah, it felt wonderful.  Wiggling her toes, Cathy closed her eyes and pretended she was wading in the bay.

“Water goed away,” Mikey exclaimed, disappointed.

“That’s okay,” Cathy assured him.  “We’ll get NEW water.”  The hose was wrapped in coils but Cathy knew how to pull it so that it would reach the hole.  She dragged it to the mud hole, and Mikey clapped his hands with glee.  “Get in.”

The mud hole was big enough to accommodate both of Mikey’s feet.  Cathy turned the nozzle on, and the cold water hit Mikey in the knees.  He squealed with delight as the water ran down his legs to fill the hole.  He began to jump up and down.  Muddy water splashed up, spattering Cathy.  She giggled at the sight of the big blotchy freckles appearing all over her clean yellow sunsuit.

“More, more!” Mikey crowed.

“Okay, but you got to swim in it,” Cathy replied, aiming the nozzle at the mud hole.

Mikey looked at the hole and scowled thoughtfully.  He could put both his feet in but not his whole little body.  He had an idea though.  He got out and waited for the water level to come near the top.  “Watch me!”  He turned around, looking over his shoulder, and taking a step back.  His little tongue darted out between his teeth as he concentrated.  He plopped butt first into the mud hole, giggling.

Cathy covered her mouth with her hand, her eyes popping.  She couldn’t hold the giggles in, though, and they burst forth wildly.  She knew Mama wouldn’t like this, though, so she dropped the hose and reached down to pull Mikey to his feet.  He was stuck, his arms and legs jammed almost straight up. Cathy doubled over, laughing so hard her tummy ached.  Mikey joined in, kicking his chubby little legs playfully.

The Wrath of God descended.  Cathy heard the expression many times before but this was the first time she actually saw it happen.  There was a sharp pain on her ear that knocked her off balance.  She fell to the ground, ear flaming, her laughter already changing to sobs.  She looked up into the face of an enraged demon.  It was so red, the face was almost a purple color, the features twisted into such rage that they were unrecognizable.

“What do you think you’re doing?”  The words spewed forth like red hot dragon fire, scorching Cathy.  She scrabbled backwards, trying to get away but the Wrath of God was grabbing her by the arm and dragging her to her feet.

“I’m sorry!”  Cathy bleated.

“Just look at the mess you made!”

Cathy saw the hand swing back.  She tried to duck but it was too late.  She landed flat on her back, screaming more from terror than pain.  Something wet and warm ran down from her nose.  There was a salty, nasty taste in her mouth that felt like snot from the back of her throat.  She spit and was frightened to see it come out red.

 "Sh, sh, sh!”  The Wrath of God had gone away, leaving Mama behind.  Mama was down on the ground beside Cathy, putting her arms under the child and lifting her.  “Sh, stop screaming, for God’s sake, shh!”  Mama said urgently.  She hurried toward the cottage.

Cathy dangled with her head down, watching little drops of red hit the sidewalk.  She could see Mikey running awkwardly behind, sucking his fingers.  Cathy wanted to tell him, don’t do that, you’ll get in trouble, too.  His diaper sagged from behind almost to his knees, and he tripped.  He didn’t cry, though.  He got up.  “Cathy, okay?” he called. 

Cathy thought Mama must have forgotten about Mikey.  She didn’t seem to notice whether he was there or not.  Cathy felt herself being placed on the kitchen table.  Mama tilted her head back.  “Pinch your nose,” Mama was saying, turning to the sink and wetting a washcloth.

The child pinched her nose obediently wondering how the Wrath of God hit her.  It was a good thing Mama showed up in time to save her!  She saw Mikey appear in the door, tears streaming down his face.

“Here,” Mama said soothingly, pressing the cool cloth across Cathy’s nose.  “I’m so sorry, Cathy.  I didn’t mean to do it.  I was just so mad because you both got so dirty.  What made you do such a bad thing?”

It wasn’t the Wrath of God, Cathy realized, stricken.  It was Mama who'd hit her!  She looked up at her mother, her eyes widening with realization and betrayal.  “I—I don’t know.”

“Well, you know I had to do it because you were bad, don’t you?”

 Mama was looking at her very intently.  Cathy’s mouth worked convulsively.  She knew she had to say something.  She must have been very bad or else Mama never would have hit her like that.  Maybe she broke a law.  “Yes,” the child murmured weakly.

Her mother leaned down close to her.  “Don’t tell Daddy, Cathy.  Don’t ever tell him.”  Mama’s voice was low and strained.  “Do you promise me?  Don’t tell him – and I’ll buy you a new doll.”

 “I won’t,” Cathy gulped, and her mother sighed deeply and leaned back against the sink.  “It’s a secret.”  She wanted Mama to love her again.  She would promise anything.

“That’s my good girl, Cathy,” Mama whispered.  “You’ll be all right now, won’t you?”

“Yes,” Cathy whispered.

“Good girl.”  Mama turned toward the door and moved quickly to pick Mikey up.  His face screwed up tightly.  “Well, my little man, I guess you need a bath.”

 Briskly, Mama carried Mikey into the bathroom.  Cathy heard the water running in the tub.  Slowly, she sat up and dangled her legs over the table.  She looked at the bloody cloth in her hand and then felt her nose and lip.  There was an odd tingly feeling, as if she couldn’t press her lips together.  She wiggled forward so that she could slide off the table.

She tiptoed to the bathroom door and listened to Mama cooing with Mikey.  He was being a good boy for a change, very quiet.  Cathy’s eyes filled with tears.  She didn’t really want the doll.  She wanted her Mama back.  This mama wasn’t quite the same, and that must mean that the angry mama could come back again.

Cathy left the bathroom and went into her bedroom, stripping the soiled sun suit off.  She hesitated and then threw it in the waste basket.  If Mama didn’t see it again then maybe the angry one wouldn’t come back.  Cathy put on a new jumper and sat down in her little rocking chair with her Campbell’s soup doll, humming a soft lullaby, waiting for Daddy to come home.  She wouldn’t tell him what happened, oh no, never.  It was all her fault anyway.  She was a bad girl. 

 

Keeping the faith in this old world

 So much is wrong in this sorry old world.  The “bad guys” seem to be prevailing and getting away with every evil act they perpetuate.  I felt very angry as I read some of the news today, and I felt the injustice and despair of it all.  How could this evil go on unchecked?  I just finished reading Jane Goodall’s book and during her interviews, she admitted that she has felt anger and despair over all this horrific stuff evil people do.  Yet, she continues to hope and I find that I do too.

We used to go to church every single Sunday when I was little and lived on Long Island.  My parents were Deaf so I don’t know what they would get out of the services; there were no interpreters provided in the early 60s.  I think one reason they went is because it was expected of them.  My grandparents, aunt and uncle all attended the same church we did.  I remember learning verses for the “big” services: Christmas and Easter.

When we moved to Maryland, we didn’t go to church anymore.  There was a Presbyterian church not far away but my parents would drop my brother and me off for Sunday school and leave to visit Deaf friends.  Pete and I weren’t happy with our classes.  I was uncomfortable with the boys bragging on their late night escapades.  They’d stolen a stop sign and even the teacher thought it was hilarious.  We told our parents we didn’t want to go.  There was two churches for the Deaf but my parents chose not to go.

I eventually did go to the Christ Methodist Church for the Deaf for a couple of years.  It was there I learned sign language and more in-depth Bible stories.  With my roommate as a young adult, I visited an Episcopal Church and learned more about Maundy Thursday.  Today is Maundy Thursday, also known as Holy Thursday.  The word maundy has to do with foot washing, which was something Jesus did frequently.  He’d humbly wash the feet of other people.  It led up to the Last Supper, where Jesus broke bread and shared wine with his disciples.

For Christians, this week is the holiest of the year.  When I use the word Christian here, I mean the real believers.  The followers of The Word.  I am not talking about the ones who claim to be Christian but who are homophobic, racist and selfish.  Those so-called “Christians” seem to be running everything and that sure is depressing.

But it won’t always be that way.  First, there are people in the world with loving, generous hearts.  They are not all Christian.  Followers of any religion or faith can have a heart filled with love for others.  Skin color, different faith, different sexuality doesn’t matter.  We’re all humans.  Being human with a loving, caring heart doesn’t mean perfection.  We can get angry or afraid.  Even the apostles weren’t perfect.  Jesus asked three of them to stay awake and watch over him, but they didn’t.

I find hope in the belief that all of the good and caring people in the world can bring change to the evil around us by standing together.  It’s not easy, especially when the evil is in authority.  But I think if people have the courage to speak out, there would be enough voices to bring about the change we need.

If not, though, I have faith in knowing where I will end up.

The Book of Hope: A Survival Guide For Trying Times

I am so glad that I signed up for ebook offer mailing lists.  I’ve found so many good books that I so enjoyed reading, especially when I can get them free from the library! 😉 The wonderful book I just finished this time was The Book of Hope: A Survival Guide For Trying Times by Jane Goodall and Douglas Abrams and with Gail Hudson.  I saw that title and I know Jane Goodall most of all from the wonderful conservation efforts she’s made and research with chimpanzees.  I thought, you know, I’ll be she’s got some great advice for the trying times we’re living in!

Douglas Abrams interviewed Jane Goodall before and after the pandemic.  She wrote in her forward: “Probably the question I am asked more often than any other is: Do you honestly believe there is hope for our world?  For the future of our children and grandchildren?  And I am able to answer truthfully, yes.”

I have to admit to feeling periods of despair over the last couple of years.  This year has been particularly trying: my mother-in-law was hospitalized and almost died from a covid-19 infection; subsequently, her gall bladder became dangerously infected and she’s just finally had it removed after weeks of persistent bacteria; devastating and horrific hostilities by the Russians on Ukrainian civilians; a dear friend is in the final throes of transitioning from life after suffering with destructive cancer; wild weather due to climate change; my husband was scammed out of $2000 from our checking account; covid is not done with us; and last, but not least, the dysfunction in Washington (without getting into it).  Yes, I have wondered if there was any hope left for the world and have grieved what was stolen from my children, grandchildren and great-grandchildren.

Jane Goodall’s research first involved the study of chimpanzees.  She learned and reported that they have feelings and can probably think and wonder.  They just aren’t able to talk.  Scientists scoffed at first but later began to give her credence.  While studying the chimps, she realized that part of the danger to them was the overwhelming poverty of the people living around them.  Her interests expanded to improving the environment.  Help the people, help the animals.  She became very concerned what was happening to the world’s environment and has established programs around the world to try to address the issues.

The interviews are so inspiring and informative.  The book is divided into sections.  First, “What Is Hope?”  After that comes the four reasons we can continue to hope: “The amazing intellect; the resilience of nature; the power of young people; and the indomitable human spirit.”  There was conversation between the two of them about spirituality.  She doesn’t try to foist her beliefs on anyone but she did have Abrams look up a quote by Albert Einstein: “The harmony of natural law … reveals an intelligence of such superiority that, compared with it, all the systematic thinking and acting of human beings is an utterly insignificant reflection.” Take from that what you will.  I have my own definite beliefs.

Finally, if we want to be messengers of hope too, what can we do?

This is the second book I would recommend to everyone.