Doctor or Dinosaur?

EDITOR'S NOTE: This post originally appeared on Yo Mamma Mamma on October 4, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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If you were a pregnant mother, and had been told your child screened positive for Down syndrome, and your fancy doctor who was going to be doing your ultrasound showed you a slide with this information on his web site, what would you think?

What are the problems with a child or adult with Down syndrome? Unfortunately, there are many. These include

mental retardation,

growth retardation,

early onset of Alzheimer’s disease,

congenital heart defects,

hearing loss,

eye disorders,

epilepsy,

gastrointestinal malformations,

hypothyroidism,

leukemia,

spinal cord compression,

increased risk for infection,

and infertility.


From www.fetal.com
You can see the slide if you click on the link in the center of the page that says "1rst trimester screening for Down Syndrome" and then look at the 6th slide

I wish all of us could have a list like this of the problems with being human. We all are predisposed to possible "issues." Some of us will get cancer at a higher rate, some have heart issues. Some of us are drug addicts, or alcohol addicts. Some have flat feet. If you totalled up everything that you might have, or your husband might have, or your typical children might have, and saw a list, you would live in fear.

In our case, so far, Violette has been quite healthy. She has a congenital heart defect, but it is minor. Thing about people with Down syndrome is that while "congenital heart defect" sounds frightening, where medicine is today, the type of heart defects typical of people with DS are usually treatable, and kids with DS do very very well after the surgery. Violette hasn't needed heart surgery, and if she does, it will be a minor procedure (believe it or not) where they will run something up her leg, and she'll be done.

Violette may have a "gastrointesinal malformation." She takes reflux medication every morning and every afternoon - a half a teaspoon full of zantac. No biggie if you stay on top of it. If you don't treat it, it can lead to serious issues. But we treat it, and she should be in good shape. (Her maternal grandmother has been taking meds like Zantac for the last 20 years for her "gastorintesinal malformation" and we all think she's more than OK.)

Other than that, right now she has bad eyes - like her mother and her father (and her grandparents and her cousins and her uncles.) And she'll be getting glasses.

This doctor irks me. I can't lie. If this slide was followed up with something about what life can be like for people with Down syndrome, a point to the quality of life of the family or a reference to learning more about DS from an organization that specializes in it (there are 5 clinics for DS in California, and several excellent parent support groups) I'd have more respect for what this doctor is trying to do. Why, for instance, didn't he comment on the fact that people with DS are less likly to get solid tumor cancers?

Doctors giving only one part of the story about Down syndrome should soon become the dinosaurs that they are. There is a new law, Public Law No: 110-374 is called the Prenatally and Postnatally Diagnosed Conditions Awareness Act.

It is the purpose of this Act to--

(1) increase patient referrals to providers of key support services for women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;

(2) strengthen existing networks of support through the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and other patient and provider outreach programs; and

(3) ensure that patients receive up-to-date, evidence-based information about the accuracy of the test.

As for me, I don't spend a whole lot of time worried about Violette's health. Monitor it closely, yes, but worry about it, not so much. I feel she is here, with us for a reason. I want to enjoy living with her silly little self and not waste time worried about what might be. The list above is merely what is possible - not a definitive list of what is going to happen. It would have been nice if the doctor had pointed that out.

Sharing the News (Our Story --Part III)

EDITOR'S NOTE: This post originally appeared on Bridget's Light on April 29, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Making the phone calls from the hospital to share the news about Bridget’s birth and telling the other kids about their new baby sister were some of the toughest things I’ve ever had to do. Everyone was expecting the exciting details of her arrival, to hear about who she looked like, and all the other regular new baby stats. Telling people that Bridget had Down syndrome--and also needed surgery--was heartbreaking. I could hear the concern in the voices on the other end of the phone, and I tried to reassure everyone that we were going to be just fine.

I told people Bridget was a strong baby, and we had dealt with other difficult medical diagnoses. We adored her, just as we adored all of the other children, and we were well-equipped to handle the additional information that arrived with her birth.

Explaining things to the kids did not come as naturally. Sitting in the hospital room with them-- waiting for the nurse to bring Bridget to us--was not like I would have wanted to picture that moment. The kids were all crying, and although the mood in the room was calm, it was also sad. Bridget’s impending surgery was a concern for everyone, and the kids did not know what to think about the Down syndrome part. They asked if Ds was a disease, or something she would outgrow, or something that she would just live with (like asthma). Chris and I tried to answer all of their questions honestly and without adding more worry. After all, we didn’t know what to expect ourselves.

The nurse wheeled Bridget’s little isolette in and everyone got to peek at her for a very short time before the transport team was ready to take her to Children’s Hospital. The kids all agreed that she was tiny, and cute, and that they didn’t want her to be taken away from us.

It’s hard to think and write about now.

Right after she was born, I felt anxiety about what was ahead for Bridget and for the rest of us. Everything was turned upside down, and I wondered if things would ever seem “normal” again. I was concerned about her health, among other things.

I spent that first night confused, sad, and without Bridget. It was an overwhelming 24 hours, and my heart was heavy at times. I alternated between joy and despair--sometimes within the same minute. I felt both empowered and helpless. I tried to come to grips with my new reality as the mother of a child with special needs and four other children who needed me to not sink into a dark, quiet place.

A life with Down syndrome was uncharted territory--vast, weighty and scary. What was happening to our world? Would I always be worried about Bridget? Would we settle into a comfortable life and routine, or would things seem foreign forever? The responsibility and permanence of it all was completely terrifying.

Sara stayed the night with me (in my little hospital bed) and my mind drifted to how I had also stayed in a similar room alone--without her--the night she was born. It was a bittersweet time. We ate ice cream and put cold wash cloths on our faces. We fell asleep sometime in the middle of the night with eyes already swollen shut from all the tears.

The next morning, one of my best friends visited and brought two adorable outfits for Bridget and a delicious breakfast for me and Sara--it was the only part of those first few days that offered a glimpse of celebration. We left the hospital a few hours later quietly, with no fanfare, and without our baby. I felt like I was in the twilight zone for a good portion of the day, and I thought about how that day might have been different if the circumstances were not the same. I grieved the loss of the happy time it should have been.

My heart pounded as we neared the NICU later that afternoon. We walked through the doors, washed up and signed in. Right around the corner from the nurse’s station, in Bed 2, was a beautiful little girl recovering from surgery.

I recognized her immediately, and the clouds parted. As soon as I saw Bridget, all the fear and uncertainty that dominated the prior 24 hours gave way to a powerful and overwhelming sense of peace and calm.

Chris and I looked at each other and smiled. It must have occurred to us at the same time. The little nose and chin, the shape of the face, the hairline, the shoulders. Yep, she’s one of ours. She is part of our family and she’s perfect just the way she is...

All at once, I understood that Bridget is not a mistake, or an anomaly. She is the way she was meant to be, and she was placed in our lives on purpose.

She was sleeping peacefully, and I don't know if I've seen anything quite as beautiful, or if I've been as certain about anything else (aside from marrying Chris)--but I knew that I was meant to be there, and that she was meant to be here.

Seeing her laying there under the bright lights, deserving and needing to be loved—just as any other baby—I knew in my heart that I would go to the ends of the earth for her. It's true that the deepest and most honest love (true love) sees the soul, the essence of a person--their wholeness. I realized in that moment that Bridget was complete. She was perfect, and she was cherished--and I knew we could handle whatever challenges we would face with love like that on our side...

The Invisible City of the Kidnapped

EDITOR'S NOTE: This post originally appeared on Living in Invisible Cities on December 13, 2009. It is reproduced here with the author's permission. This particular author does not have a child with Down syndrome, and this post is not about Down syndrome. However, its message is powerful and relevant to many parents in the Ds community, and the author graciously allowed me to include it in this collection. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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I have been shanghaied. Taken and stored in a terrible stinking rotten crate aboard a vessel I have not had the courage to name. I have waited for this since Willa’s diagnosis. We knew it was out there, on the high sea, waiting to come in on some moonless night to snatch us away and hold hostage everything we have built up as a wall of defense. We are defenseless. Willa has cancer.

Right after my last post Willa had her routine ultrasound. The Radiologist came into the room and said, “the baby has a large mass in her pelvis.” Again, the darkened quiet room. Why do we always get the worst news in such places? There was a television on in the background playing a cartoon that Willa has no interest in. She smiled at the doctor. She waved. She laughed.

I knew what it was, the nails were hammered into the crate, we were loaded onto the ship.

Next followed the storms of diagnostic testing, the bone scans, the biopsy, the CT, the bone marrow pull… We were tossed about becoming bruised fruit at the feet of those with power. We had word quickly. Rhabdomyosarcoma, Stage III, to date inoperable.

We were transferred to another vessel. Willa will have a year of chemotherapy. Every week we now go to CHOP and she has poison poured into a port by her collarbone. She smiles. She waves. She laughs. My crate has been thrown overboard. I am barely floating, more submerged in a reeking ocean of foreign garbage and dead fish.

But still, I purse my lips and lift them above the water line inside my new home. I keep breathing. I have learned so many lessons of survival from Willa and that knowledge is being tested most acutely now. I have to hope that someone will find me out here. The waves will push me into shore. That some strange ocean animal will befriend me and share what they know of this place. I will gain new sea legs. I may grow gills to breathe.

In the hospital my heart breaks for the other parents. They never saw this coming. They had perfectly healthy typical children and then were given such news, their child has cancer. They wander about the halls with crazy eyes. They cry when pouring their coffee. They mutter under their breath and the smell of fear is everywhere on them. I smile at them as much as I can. I speak when they can hear me. I look them in the eye and try to offer calm because I know that fear. I am just more prepared for this. For us it was a fixed mark on our permanent horizon. We hoped to avoid it but now we are here.

Willa has lost her eyelashes. Her hair is following and then her eyebrows will depart too. She looks different. Her coloring is profoundly altered, her stomach swelled with tumor. Her belly button pushed out, the skin taught and shiny and horribly horribly wrong. But the weeks have passed. The medicine is running like wildfire through her veins and the mass that spelled such tragedy is shrinking.

Our goal is to remove it as soon as it is small enough. She is too young, too delicate for radiation. The protocol is chemo and extraction and more chemo. This ship will be at sea a good long time. This is my message in a bottle. I had feared saying these things out loud. I feared the permanence of writing them down, of thinking them, of sharing because when others read, hear, see, it is real. Totally, unchangeably real.

Willa has cancer.

Will we ever know the feeling of solid ground? Will she ever have a release from all this hurt? Will we continue to have the strength? Can my fingers web? Can my skin grow scales? Can my back allow a fin to break through by which to steer myself in the right direction? Or will we die, locked in these crates, the worms making a deep-sea meal of our hopes?

We are truly invisible now. No one can see us. But hearts beat in these boxes. Their rhythms will make the waves. We will make our own weather.

Stolen Embrace

EDITOR'S NOTE: This post originally appeared on The Unknown Contributor on March 16, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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“Do you want to hold her?” The nurse asks me. I do want to, but I am nervous. She is very ill now, deeply poisoned by an army of invisible creatures. Her body is so weakened that it has been skipping and faltering. There is a zigzag of wires and tubes connected to her, all feeding her body something it needs to survive this. There is a gaping hole in her flesh just above her stomach, where the stitches surrounding her feeding tube have slipped out. Through the hole I can see her dark red, almost brown, shiny stomach beneath the skin edge. I look away and face the nurse.

“Yes” I say bravely. I settle myself into the chair they have placed beside her metal and plexiglass bassinet. The hard, wide chair is set awkwardly close to the equipment because my baby’s lines don’t go far. I tuck blankets under and around me, trying to mimic the feel of a nursery rocker. It takes me a moment to drape a sweet smelling cotton blanket over me, arranging the pink-edged swath across me to form a barrier between my perhaps germ-infected clothes and my daughter’s fragile body. As I get settled, the nurse adeptly wraps up wires, moves feeders and medicine pumps, disconnects the heater, and scoops my child out of her bed into my waiting arms.

I study her beautiful face. She is so dainty with a rosebud mouth, tiny nub of a nose, and huge dark blue ringed eyes. I want her to smile or somehow indicate that she is happy to be with me, that she knows me to be different from the hoards of others who handle her but she is too sick for such affections. Her six and a half pound body feels very heavy to me. I realize that she is perfectly still, not breathing. Bile and panic rise in the back of my throat.

“She’s not breathing.” I manage to squeak out to the nurse who is hovering over us. The nurse quickly turns to consult the monitor screen. The numbers reassure her.

“She’s ok,” the nurse replies over my shoulder.

“She’s not breathing,” I say again louder with strong emphasis on the word not.

The nurse glances at the screen again. She puts her hand on my shoulder to soothe me and says, “She’s ok. It’s ok.”

A baby girl in our pod has died this morning. Infection, our shared enemy, destroyed her overnight. Not more than an hour ago I was with that mother and child as the mourning process began in the hospital’s small “family” room. That mother and I had passed a bit of NICU time together waiting on our daughters. She held out her baby, already dressed up like a little princess, and I accepted the bundle because no other reaction seemed appropriate.

It has only been a few seconds. The nurse trusts the monitors and she thinks I am having a reaction to the morning’s sorrow. But now I know what it feels like to hold a lifeless baby and this feels exactly the same. I am shaking from an overload of adrenaline in my system. I want to throw my baby into the nurse’s hands. “She is NOT breathing,” I hear myself shouting. My arms will not obey me and I cannot lift her up.

Finally the monitor corroborates with me and sounds the alarms. Immediately the nurse whisks my baby away, up on to the open bassinet, and begins to bag her with a portable mask and oxygen pump. I stare at the monitor watching for my baby’s return. It comes swiftly. The nurse assures me that Kimani is ok, that the apnea has passed.

It is not ok though, because now I don’t want to hold her anymore.