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.