Tag Archives: Fiona’s Hope Totes

A Year After a Painful Week

It has been a year since I wrote “A Painful Week in the Down Syndrome Community,” about three toddlers who died. Two left suddenly: a boy who contracted meningitis, unrelated to his Down syndrome, and a girl who suffered complications from a second heart surgery. Both of their families have created non-profits in honor of their children, T21 Ryder’s Foundation and Fiona’s Hope Totes. The third baby, Annie Wojtowicz, died slowly of heart failure in the arms of her family.

11699b0256fc7c39525a3d41267d538aI learned of Annie two weeks before she died while I was preparing to travel in Europe with my eldest son. I cried every day as I watched, via Facebook, this small girl grow weaker, her face more swollen, her eyelids red and puffy. My children asked me why I kept returning to Annie’s Facebook page when it made me so sad, they told me to stop, but I couldn’t. In her and her family I saw Lyra and our family, two daughters with Down syndrome born months apart, both with dual diagnoses, but only one of which was fatal. Annie died a year ago today and her family has shared their grief with the world on her page, Annie Golden Heart. In the days after Annie died the page was taken down, but then it returned and many people, including myself, continue to follow Annie’s family. As I traveled Spain with my son, I carried with me these three families while on Annie’s page I saw her funeral, her freshly covered grave, the unbearable sorrow in her parents’ eyes. I lit candles at every La Pieta station we found at every church we visited.

On Father’s Day 2014, Ryder and Fiona were only days gone while Annie had but three days left to live. The day before, I cashiered at World Market, where I work a handful of hours each week. It was busy, as it often is the day before a holiday, with people buying last-minute gifts and I felt cheerfully distracted from the sorrowful week. Then a woman my age bought a Father’s Day card with a photo of a child’s tiny bare feet atop a pair of leather oxfords, clearly dancing with her daddy. Tears suddenly rolled down my cheeks.

“I’m so sorry,” I said to the customer. “My daughter has Down syndrome and there have been babies her age who have died this week. Your card makes me think of their families.” People who have a relative with Down syndrome often speak of the uncanny coincidences that are seemingly commonplace in this community.

“I had a sister with Down syndrome who died when she was a baby because they couldn’t fix her heart back then,” said the customer as she held my eyes with her own. “My parents never got over losing her.”

Grief is a foreign country that makes citizens of all who travel there. Only previous visitors can fully understand the experience of those who find themselves suddenly dropped in the place that changes everything forever. While the only way through grief is to grieve, no two journeys are the same. But often the loss of a child is described as the most intense grief. The natural order calls for children to bury their parents, not for parents to bury their children.

In the year since these three children died all in one week, several other babies have gone too. The stories of children succumbing, often to heart or respiratory conditions, are shared and then these families disappear from the closed Facebook groups concerning Down syndrome. Our pediatrician, Dr. M., whose own daughter has Down syndrome, gave me a big hug in her office last summer. “I can’t do Facebook groups because I see so much loss just practicing medicine. We can each handle only so much.” Annie’s family continues to openly share their process and in so doing are, for me at least, something of a proxy for all those who have lost a child with Down syndrome this past year. Her parents and sisters regularly visit and decorate her gravesite and when the groundskeepers clear off the toys and tchotchkes, it exacerbates the pain of having had Annie herself taken from them. It seems to me that cemeteries should have special allowances for the decorating of children’s graves, particularly in the first year after the child has died.

Last August bioethicist Richard Dawkins tweeted to an expectant mother who asked him what she should do if her fetus was diagnosed with Down syndrome, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He later claimed his position was humane as seeking to avoid suffering. The response was terrific. Articles appeared in places like the New York Times questioning the use of the term “suffering” as it relates to having a child with Down syndrome given the significant scientific research that proves just the opposite, something I, too, wrote about in “What Suffering? The Down Syndrome Advantage.” People with Down syndrome are overwhelmingly happy with their lives, their parents’ marriages are stronger than the national average (based upon divorce rates) and most siblings cite having a brother or sister with Down syndrome as a highly positive experience.

Annie’s family has observably suffered. The other families who have lost children with Down syndrome understandably, if not privately, have suffered too. At times, Annie’s father has posted a depth of suffering that is concerning. Suffering that is so great because the love is so deep.

Today, it turns out, is also an anniversary of a different kind. It is the fifth birthday of a little boy with Down syndrome in our local community. In a post that includes several pictures of the two of them together, his father writes, “Thanks for helping find my why, buddy!”

With any child comes the risk of unimagined suffering. But also the greater likelihood of immeasurable love and joy.

Nothing to Fear: Human Rights for People with Down Syndrome

Sarah and I were in Pittsburgh for Quilt Market where we stayed at the downtown Westin. When the elevator stopped on our floor there was a man dressed in business attire already on it. I looked over at him and could see tears welling in his eyes. By the time we got to the second floor to get off, the tears were rolling down his checks. My first impression was maybe he just got fired from his job. Then I thought maybe he was in town for a funeral. As Sarah and I walked off, he came over to us and asked if he could share something. He could barely get the words out but managed to tell me that he and his wife had been expecting their fourth child, a girl, and they knew she had Down syndrome but his wife miscarried three weeks ago. My natural reaction was to give him a hug and tell him how sorry I was. His reply brought tears to my eyes, too. He said, “Thank you for saying that. Everyone else is telling us it was the best thing that could have happened. I see your daughter and she is beautiful.” I was at a loss for words so I gave him another hug and then we went our separate ways. But I thought about that interaction all weekend. Why are people so afraid of Down syndrome that they would tell a grieving family it was for the best? ~A post in my Facebook feed this past spring.

My essays on Whoopsie Piggle have, by design, emphasized how having a child with Down syndrome is little different than having a child without Down syndrome, which is also why not all my essays focus exclusively on my daughter Lyra and her DS. I read somewhere that we are all on the path of disability whether caused by age, illness, accident or an extra chromosome. Tangentially, I have discussed medical issues that are more common in people who have Down syndrome, most particularly vision issues as Lyra was born with bilateral cataracts (occurring in 3% of newborns who have DS versus .03% of those born with 46 chromosomes). More recently, and painfully, I have written about the congenital heart problems that affect approximately 40% of the population with Down syndrome. Before this summer, I had met so many babies and young children who had undergone successful heart surgeries that I unintentionally dismissed the gravity of these cardiovascular diagnoses. And then three babies, all the same age as Lyra, died in just one week this past June. I wrote about babies Ryder, Fiona and Annie in “A Painful Week in the Down Syndrome Community.” Without rescinding my position that having a child with Down syndrome is little different than having a child without DS, I believe it is vital to discuss the possible medical complications that can accompany a diagnosis of Down syndrome. Why? Because uninformed fear causes people to say hurtful things. Because poorly informed medical personnel say fear-driven, and largely inaccurate, things when giving an expectant mother the news that the child she is carrying has an extra twenty-first chromosome. Because in some parts of the world, including regions in the United States and Canada, the Down syndrome population is undergoing a quiet campaign of genocide.

Children May Die

In my last essay, I wrote about traveling in Spain this summer with my oldest son, Claude. Watching my firstborn become a fully-fledged adult has made me ridiculously emotional. I don’t think of myself as a crier. As a child I learned not to cry at all costs. I rediscovered my tears when I became a mother, but in the past two years, I surprise even myself with sudden and unpredicted weepiness. I mentioned crying as I told a Starbucks barista in Barcelona how delightful it was for me, a mother of a child with Down syndrome, to see the respectful and fun relationship the café employees had with their team member who has Down syndrome. What I did not write in that essay was that every morning in Spain, every single morning, I cried. Most mornings, Claude rose and went for a run, leaving me to shower and get dressed. Before I did, however, I’d pull up Facebook on my phone while still lying in bed and weep over the pages of the babies who had died the week before I’d joined Claude in Spain. After her first heart surgery more than a year ago, Fiona’s remarkable parents created Fiona’s Hope Totes, which has its own Facebook page. This non-profit delivers care packages to families in Minneapolis/St. Paul who are experiencing an unexpectedly extended hospital stay with a sick child. The day before she died, Fiona’s family posted an urgent request for prayers as Fiona had been rushed back to the hospital due to complications after a second heart surgery. In the weeks after she died, that post requesting prayers remained the last post on the page, like a scream that wouldn’t fade as the family privately grieved.

Baby Annie’s doctors would not place her on a heart transplant list, whether due to complicating medical issues or the fact that she had Down syndrome remains ambiguous (that there is discrimination against the developmentally disabled getting organ transplants is not ambiguous, the subtle discrimination is real). Annie’s parents opened their lives to the world on her Facebook page, Annie Golden Heart. When I learned of her situation, Annie was alive, but in hospice attended by her parents and two sisters. Each day, I followed her page, hoping for a miracle, hoping as her story drew substantial attention from people worldwide that someone, somewhere would find a way to save that baby. Instead, day-by-day as I and countless others watched, Annie grew bluer, more lethargic and puffy. And then she died. In Spain, I saw the daily posts of a family submerged under and shattered by grief. Pictures of a baby’s grave more preciously decorated than any child’s bedroom, photos of a healthier Annie just months earlier including a collage of the once smiling tot with vibrant red hair and the facial features of her daddy. However, the photo that made me touch my iPhone screen with my finger, as though I could pass comfort through my device, was of Annie’s oldest sister with her face painted to look like a tiger. The caption read: Today is Nicole’s 9th bday. She has been a great sister to Annie. We are so thankful to Marie for taking the girls out today to have fun since it’s still very hard for us to even leave the house. Happy Birthday, Tiger!!!!

Only recently did I learn that baby Ryder had group B meningococcal disease, the most common strain of bacterial meningitis found in the United States (though Ryder did not live in the U.S.). I have found no evidence that having Down syndrome makes a person more susceptible to meningitis or the consequences of the disease more severe. What Ryder’s family is going through I would not wish upon anyone, but his Down syndrome had nothing to do with his death. I carried those babies, Fiona, Annie, and Ryder, with me as I traveled Spain with Claude.images When we visited churches, I looked for La Pieta stations in which Mother Mary holds her dead son, Jesus, just after he’s been removed from the cross. When I found them, I lit a candle for those families. You do not have to be Christian, only human, to feel the emotions of that station in Mary’s life. It’s easy to imagine for centuries parents who have lost a child have found La Pieta a sanctuary of familiars.

When I returned to the States, I was too busy to look at Facebook for a few days. When I did, I saw that Annie’s page had been taken down and Fiona’s Hope Totes had resumed. Fiona’s valiant family was once again delivering care packages to families. Everyone’s journey with grief is unique and there is no accepted protocol except to grieve. A few days later, Annie Golden Heart was again a page on Facebook. I found Ryder’s page and his parents and two older brothers have taken Ryder’s favorite toy, Bear-Bear, traveling with them and posting photos of the white bear at an aquarium, a theme park and in the arms of Ryder’s older brother who took Bear-Bear to bed with him for comfort.

The Ones Who Live

Most babies born with heart defects survive due to surgical corrections that have, in most parts of the world, become routine procedures. But sometimes babies born with congenital heart defects, both with and without Down syndrome, die. And the parents who lose children with Down syndrome grieve every bit as much as other parents. But what about the children with Down syndrome who live?  Most, but not all, babies born with Down syndrome have developmental delays. Meaning, things just take longer and sometimes more support is required along the way. Though hitting developmental milestones later than their peers without DS, most people with Down syndrome will walk, talk, dress themselves, read, go to school, graduate high school, cook, receive post-high school education or training, get jobs, fall in love, live independently, grow old and, like us all, one day die. That is “typical” life with Down syndrome. But what about the babies who face medical challenges beyond developmental delays and heart defects?A friend recently posted that she worries about telling people her son with Down syndrome has seizures. She is glad “he’s alive and he’s mine” but fears that someone else expecting a baby with Down syndrome who knows her son has seizures may chose an abortion based upon his case. Another friend told me about a woman who is a single mom of a boy with DS who is probably deaf, cannot talk, and cannot walk.

We, in first world countries, live in a medically miraculous time. A time unlike any known to humanity, in which death does not often visit us until we are middle aged. My ex-husband’s family lived for well over a hundred years in a small town in southeastern Ohio. Over the years, I heard stories of an ancestor named Flavia. Born in Germany, she studied music and had been introduced to at least one famous composer. In their tiny town in Ohio, Flavia taught music to children and had a parrot that often provided vocal accompaniment. On a visit back home (as my ex-husband used to call it), his aunt told us that Flavia’s gravestone had been vandalized and repaired. Later that afternoon, we stopped at her grave, which we had learned only that day was very near the city’s brick firehouse. I have no recollection of Flavia’s gravestone; I only remember the two stone lambs carved in marble on top of much smaller gravestones next to Flavia’s. Cholera claimed two of her children, ages four and six, in one summer, something nobody had ever mentioned. In the nineteenth century childhood death was not remarkable, yet families grieved as deeply as they do today. Visit any cemetery that dates back before the existence of antibiotics and you will find entire sections devoted to children, families who birthed eight, ten, or more children only to bury all but one or two.

Overwhelmingly, modern medicine is good, but not everything can be fixed. In the typical population, children are born regularly with, or later develop, learning disabilities, autism spectrum disorders, seizures, cancer, mental illness, vision and hearing difficulties. As of now, and unlike Down syndrome, these conditions cannot be detected with prenatal testing. However, that will likely change. And when it does, what will then be considered acceptable? Who defines which babies are perfect enough to be born? In human history, one need look no further than the past century to find pernicious programs to reduce or eliminate certain groups. Black women in the United States were frequently sterilized without their knowledge or consent. The Nazis target Jews, gypsies, homosexuals and the developmentally disabled (among many others) for systematic elimination. As the child of Christian missionaries in China, Pearl S. Buck regularly found the corpses of female newborns who had been discarded like trash. Looking back, this much is clear: once a society has decided that certain groups are not equal or good enough to exist, that decision is never static. If today it seems reasonable to seek a society free of members with Down syndrome, I guarantee that in the near future, particularly as prenatal testing begins to tease out more and more pre-existing conditions or potentials, the slippery slope of genocide will expand.

Weeding Out Variation

That Down syndrome is diagnosable, not only at birth, but also in prenatal testing, is good because, unlike autism or dyslexia, which are subjective diagnoses, results come easily and quickly. With an accurate diagnosis, appropriate support can be given to maximize the potential of an individual diagnosed with Down syndrome. However, because it is a yes-or-no clinical diagnosis, parents can also elect to abort a fetus because it has Down syndrome. Let me be transparent: I believe abortion should be safe and legal. I also believe it should be extremely rare and that support, including free birth control, should be available to all women to reduce the number of abortions. However, what the population with Down syndrome now faces is not an issue of abortion rights, but human rights. To target a specific segment of the population for elimination is simply genocide. We now have the medical means to tell a woman with a simple blood test whether or not her fetus has Down syndrome, underscoring two important points:

  • d6255c3f346e773727932e0f5a74b58aMaking abortion illegal won’t stop the termination of pregnancies where the fetus has Down syndrome any more than it would end abortion for fetuses with 46 chromosomes. In Ireland, where abortion is illegal, the abortion rate for pregnancies where the fetus has tested positive for Down syndrome is 50%.
  • Once we’ve chosen as a society to decide who is human enough to live and who needs to be eliminated, watch out. Any group could be next.
  • Unbiased, accurate information is every woman’s right when receiving a diagnosis of Down syndrome for her fetus or newborn.

In the U.S. we know, based upon statistics, approximately how many babies should be born each year with Down syndrome. But, on average, only about half as many are. For several years in Denmark, aggressive prenatal testing accompanied by counseling that encourages aborting fetuses with Down syndrome has brought the rate of Down syndrome termination to a consistent 90%. In France, it’s over 80%.

My Child Is a Figurative Billboard

In early June, before all those sweet babies left us, my partner Max and I went to a party. We brought four of our children, Hugo, Jules, Leif and Lyra, to the family-friendly event at a beautiful home with a sprawling yard. I had a fabulous conversation with a woman who was smart and funny. After a long conversation, we separated and then reconvened. Lyra was nearby hustling around on all fours with her newly-perfected bear walk.

“She’s so cute, how she crawls on her hands and feet.”

“ Yeah, it takes them so much longer to crawl and walk with Down syndrome.”

“Wait, your daughter has Down syndrome?” the woman asked, looking astonished.

“Oh, yes,” I said. To me it is obvious Lyra has DS, but I am now firmly located on the inside of the larger community of those who have family members with DS and can recognize it more readily than I could before Lyra was born.

“You are so much stronger than I could have been,” the woman said and I disagreed with her. “No,” she continued, “I’m telling you that you are stronger than I was. In my late 30s, I was still single, I had IVF to get pregnant. When I was pretty far along, they told me the baby had Down syndrome and gave me two days to decide. I couldn’t do it. I would have been alone, I…I didn’t do it.”

“I have no judgment,” I said, knowing this woman made the best decision she could with the information she was given. I then watched the features on her face rearrange themselves, her eyes going from narrowed and intense to wide and open.

“But I see your daughter and,” she paused, “it makes me wonder.” I gave her my card, but not surprisingly, I never heard from her. In five minutes, I watched a woman think she could not have possibly raised a child with Down syndrome to wondering deeply, perhaps painfully, what her life really might have been like as the mother of a child with Down syndrome.

Educating the Gatekeepers: Medical Professionals

It is tragically ironic that at a time when we better understand Down syndrome as a range of developmental delays and that those who are diagnosed with DS often positively respond to appropriate interventions, the termination rates in pregnancies with a diagnosis of Down syndrome are escalating to an alarming degree, in some places to the point of annihilation. We have the knowledge to diagnose and remediate Down syndrome but far too often, the message given with the diagnosis over-emphasizes worst case scenarios or contains information that is ridiculously inaccurate. (See the opening quote of “Fully Human and in Need of a Civil Rights Movement.”) Medical professionals, whose job it is to know the latest research findings, are not always giving scientifically accurate and balanced accounts of what it means today to be born with Down syndrome. In fact, statistics suggest that more often the opposite is true. My own understanding of Down syndrome has dramatically changed since the birth of my daughter. What I once saw as the reality of life with Down syndrome I now realize was based upon meeting people who had spent their entire lives, often beginning at birth, in institutions. My daughter stands on the shoulders of the past two generations of people born with Down syndrome who have been raised at home and in their communities, many of whom have worked with physical therapists, occupational therapists and speech therapists. Just as with her brothers, we expect Lyra to strive, even work hard, for all she can accomplish while we support her efforts in any way we can.

Preaching Past the Choir

Parents who have children with Down syndrome know that our children are more alike than different, that they enrich our communities and deserve, as do all human beings, to live full, productive lives. However, until everyone who does not have the pleasure of knowing someone with Down syndrome is made aware of the full humanity of people with Down syndrome, the population remains at risk for a quiet campaign of prenatal genocide and medical discrimination, whether in the form of inaccurate information at diagnosis, low expectations of children with Down syndrome (she’ll walk/talk/learn poorly because she has Down syndrome), or unequal access to medical care, including organ transplants. There are a number of organizations working to eradicate discrimination against people with Down syndrome by educating people everywhere. Please feel free to share the names of organizations you know of in your comments. Here are some that are doing very important work:

  • The National Down Syndrome CongressThese are the folks who conduct the annual convention we have attended each year since Lyra’s birth have as their campaign “More Alike than Different.” Their mission is “provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome, and work to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.”
  • The National Down Syndrome SocietyWith the mission “to be the national advocate for the value, acceptance and inclusion of people with Down syndrome,” NDSS often takes the lead on legislative issues such as the ABLE Act (read about the ABLE Act in “Miss Lyra Goes to Washington“). NDSS is the national sponsor of the Buddy Walk, a fundraising and awareness campaign that takes place each year in cities across the United States. Our local support group, The Upside of Downs, is an affiliate of NDSS.
  • Down Syndrome Diagnosis NetworkThis newly formed organization was created by a group of Mamas who have babies the same age as Lyra. DSDN’s long-term goals include filling in the gaps of inadequate support systems. In addition to supporting new families, DSDN is focused on changing the diagnosis conversation with the vital mission to help “parents give their medical providers feedback on the quality of their prenatal or birth diagnosis conversation.  DSDN provides health professionals the necessary resources in order to deliver future diagnoses with unbiased information and support.” Read: gatekeeper education campaign. The work of DSDN is paramount, now more than ever.
  • The National Center for Prenatal and Postnatal Down Syndrome ResourcesComplementing the work of DSDN, this organization is a clearinghouse of the most up-to-date information regarding Down syndrome. Furthermore and significantly, this organization tirelessly advocates for legislation, state-by-state, requiring accurate information be given with a diagnosis of Down syndrome. For information on the various states that have passed legislation requiring accurate information to accompany a DS diagnosis, and how it has been carried out, read this.
  • The National Down Syndrome Adoption Network: Not everyone, for whatever reason, can raise a child with Down syndrome, like the single mother who struggles to raise her son who is also medically fragile. And no matter how much education is given, there will still be some families who simply may not want to keep a child with Down syndrome. NDSAN is a non-profit that works both with birth families seeking placement of a child with Down syndrome and families who wish to adopt a child with Down syndrome with the mission of ensuring “that every child born with Down syndrome has the opportunity to grow up in a loving family.”

The Choices People Make

Along with the families who lost their babies this summer, I have thought frequently about the woman I met at the party who had terminated her pregnancy. Her desire for a baby had to be substantial as IVF is a painful, lengthy and expensive process. But then she was given frightening information and the directive to decide in two days what she would do. Knowing what I know now, I can only wonder: What if she had met Lyra before she received the diagnosis? What if she—and thousands of expectant mothers like her—had been given accurate information along with resources for support? I cannot help but believe, based upon the change I saw this woman undergo in five minutes, that today she would be the proud mother of a child with Down syndrome. And if all women were to receive the full and unbiased information that they deserve as autonomous adults, would we then be closer to a society that values the human rights of its Down syndrome citizens, rather than one that tacitly endorses the elimination of that population? I believe that, yes, we would.

Part 3: After a Dying Week

I should be packing. I leave in less than 48 hours to join my oldest son, Claude, in Spain for two weeks of backpacking adventures. It usually takes me one to two weeks to write (and re-re-re-re-re-write) an essay before I’ll post it and yet this essay is the third this week that I’ve written, and posted, in a few short hours.

It’s those three babies.

Providence or Coincidence

It’s often mentioned in Down syndrome communities that remarkable coincidences happen with seeming regularity. For many, they seem providential. Under “Religion” on my Facebook profile, I have “rabid agnostic.” Yes, I’m a practicing Buddhist, but who am I to say one religion is more true than another. (As a religious studies major in college I was often asked, especially at parties, which religion was the most true. Truth is in the eye of the believer and followers of all faiths equally believe in what they believe.) One person’s God is another person’s universal plan is another person’s coincidence.

I work at World Market. If you don’t know it, think Pier One with food. I don’t work there often—a closing shift, one or two times a week. Then, for no explained reason, I was scheduled from noon to five the Saturday before Father’s Day. A woman came to my register with Father’s Day cards. One of them pictured little bare feet below the hem of a dress standing atop a man’s pair of shoes, presumably dancing. I took a quick glance inside the card. With every step, I love you more. Happy Father’s Day.

“Oh, my, I think I’m gonna cry,” I said and promptly teared up.

“Oh, you really are!” said the customer.

“I’m sorry. I have a daughter with Down syndrome and a baby I know died yesterday after her second heart surgery. Her family is planning a funeral now, on Father’s Day weekend.”

Yes, I chat with my customers all the time, but this was far beyond anything I typically reveal. Thoughts of Baby Fiona’s family, which had not left me since I had heard the news, did not leave me when I clocked in at work. Baby Fiona, who had a successful second heart surgery, was sent home, only to be rushed back to the hospital two days later. She died five days after her surgery. As I’ve written before, her family started Fiona’s Hope Totes a year ago after Fiona’s first heart surgery, packages for families unexpectedly spending extended stays with a child in the hospital.

“Oh, please don’t apologize,” said the customer who was about my age. She gently continued, “I had a sister with Down syndrome who died when she was only one because, back then, they couldn’t operate on their hearts like they do now. It stayed with my parents for the rest of their lives.” I looked her in the eye and apologized for her family’s loss, briefly holding the moment together before the world rushed back in and I began ringing the rest of her items while cheerfully talking to her like any other customer.

Of all people, I lost my composure with someone who intimately understood what Fiona’s death meant.

Carrying On

Baby Fiona was buried this past Friday. The day before, a member of my Facebook group (moms with babies who have Down syndrome who were born in 2012 and 2013) took a card and a check to Fiona’s family. In a couple of days, we had collectively donated over $800 for Fiona’s Hope Totes.

Baby Annie, She of the Golden Heart, about whom I also wrote in “A Painful Week in the Down Syndrome Community,” was buried yesterday. On her Facebook page her family posted pictures of her tiny, white casket. I first saw a photo of her large, guardianesque father standing near the small, white box that now holds his daughter instead of his strong arms. A photo of her mother, seated in front of the casket with one of Annie’s sisters standing next to her, showed a woman who has been through hell and isn’t sure she will ever leave.

It’s not clear whether Annie was wrongly denied a heart transplant or not. But what is clear is that people with disabilities, including Down syndrome, do not have the same access to transplant lists as people without disabilities. Discrimination against the developmentally disabled is illegal, yes, but it has been clearly established that subtle discrimination greatly affects who gets on organ transplant lists. At the core of the issue is the value of human life. Who decides and why? Is it economics? Is it academics? Is it how many widgets a person can make? What factors are weighed in deciding who gets to live and who doesn’t? Who has a chance to survive and who must die in the arms of his or her devastated family?

What a Week

Anyone need a drink after this week? TGIF. Love ya, ladies. ~a mom on (‘12/’13) Moms with Kids Rockin’ the Extra Chromosome

Gallows humor. This weekend, many of us raised a toast to the deceased babies, their families, and each other.

Meanwhile, another friend has been with her mom in hospice for weeks, posting photos of days when her mom was young and feisty, her adoring father in many of them. A good death is like a good birth; if you are lucky, you are midwifed in and midwifed out. When the mother of my heart, my father’s mother, lay dying, I could not be with her because I lived more than a thousand miles away. But I have been there for others as they lay dying and it is a gift and an honor to be there.

As sad as we are when our elders leave—I miss my grandma daily—it is not the same as losing a child. Losing a child is to completely upturn the natural order of things and never have them completely set right again. My grandma lost her only daughter, shortly after birth, due to the Rh factor. Her lifelong grief so affected me that I refused to have an amniocentesis when I was pregnant with Lyra. My grandma had four boys and I have four boys. If I had done anything to risk it, I might have lost my only daughter just as she lost hers. Magical thinking? Perhaps. Yet I have never regretted my decision.

Uplifting Site

“What can I expect with her cataract surgery?” a new mother asked me a few months ago. Like Lyra, this woman’s daughter had been born with Down syndrome and bilateral cataracts. The baby has the same team of ophthalmologists as Lyra, which means I felt comfortable telling this mother not to worry, though of course she would. Baby H did fine with her eye surgeries, though one eye needed a second surgery to remove scar tissue. Earlier this year I had been in a marketing group in which all participants had family members who are developmentally disabled. One mom explained that her daughter had once worked at a mainstream job but now worked at a county program, which was better for her daughter socially because she enjoyed being in a program where the other people were like her. Remembering that, I decided immediately upon meeting Baby H’s mom that Baby H was destined to become Lyra’s best friend because the girls have so much in common.

Baby H was scheduled for heart surgery in July. After nearly two years of living with a baby with Down syndrome, a population of which forty percent are born with congenital heart defects, and I’m used to other babies going in for heart surgery. Open heart surgery seems strangely routine, no matter whether it’s a hole in the heart or something else. Ultimately, however, Baby H couldn’t wait until July. She was hospitalized on Mother’s Day and declared too weak for her to undergo the surgery she needed to fix why she was so sick. Weeks passed and Baby H remained in Akron Children’s Hospital PICU. I asked a friend who told me after last winter’s hospitalization of my son, Jules, that her mom had a direct line to God, to please have her mom pray for Baby H.

Two weeks ago, Baby H was strong enough for surgery. The surgery took hours upon hours and when done, her heart was too swollen for them to suture her chest. They closed her up a few days later. This week, she was finally extubated and her family has held her in their laps for the first time in over a month.

I went to Baby H’s Facebook page this week to lift my spirits.

Gratitude

When we learned after Lyra was born that she has Down syndrome and cataracts, Max and I told each other, Well, at least neither is life threatening. We thought we knew what we meant and we did. Intellectually. These past ten days have broken us down. We feel connected to these children with Down syndrome, and their families, who did not make it and both of us have cried repeatedly, suddenly and at length. Lately when I look at Lyra, all I see is her her energy, pink color and robust health.

Our hearts ache for the families of Ryder, Fiona and Annie Golden Heart (she’ll never be just Annie to us). It’s not the natural order of things to bury a child and I have no doubt that these parents, like the parents of my customer at World Market, will carry their children with them all of their days. The siblings too.

Fully Human

Now what happens? Here I’ve been working on a book proposal about the need for a civil rights movement for people with Down syndrome and I had no idea that there was undeniable discrimination with regards to who is placed on the transplant lists. It just didn’t occur to me. Now learned, I will not forget. I’ll carry it with me all of my days and do what I can to end this discrimination by continuing to write about what it is we can expect from people with Down syndrome, which is far more than most people realize. Educate those who do not know what it really means to have Down syndrome, especially those in the medical community, many of whom are woefully and shockingly unaware of the facts and yet often have the power, both positively and negatively, to make a difference. Advocate for people with Down syndrome to lead full and productive lives. Defy discrimination and stereotypes with each and every success story, exploding false and outdated conceptions of Down syndrome. Educate. Advocate. Defy.

I will do it. The mamas at my Facebook group are doing it. The folks and families at the Upside of Downs are doing it. Rob and Ellen Snow at Stand Up for Downs are doing it. The Down Syndrome Diagnosis Network is doing it. Numerous large national organizations, like the National Down Syndrome Congress and the National Down Syndrome Society, are doing it. Please join us in ending discrimination against the developmentally disabled. If I haven’t convinced you yet, stay tuned. I’m on a mission.

Part 1: A Painful Week in the Down Syndrome Community

Real Community, Virtually

When Lyra was four months old, I met a woman at a meeting for new parents of children with Down syndrome. A few weeks later, she sent me an invitation to join a Facebook group titled “(’12/’13) Moms with Kids Rockin’ the Extra Chromosome.” I remember thinking the title was a bit cumbersome, but I don’t recall what I expected when I clicked the “join” button. Not much I suspect for, at first, I hardly looked at or commented on the page. I was busy with my family, my baby and her diagnoses of Down syndrome and bi-lateral cataracts and all the adjustments that go along with any new baby. Today, I have a list of all I did not know or anticipate:

  • I thought the group was local, but it is not. Though most members are Americans, the group has families from all over the world.
  • I had not anticipated the value of an immediate and large group of moms whose kids with Down syndrome were the same age as my child and, therefore, will go through the same stages of development at roughly the same times as my child because…
  • It did not occur to me at first that this would be a lifelong group, but once it did I was floored that something like it hadn’t been created before and reminded that, for all its distractions, the Internet’s impact can be profoundly positive.
  • I could not have imagined how close I would become with some of the other moms. Back in the old days, before Facebook, I never participated in chat rooms. Even today, I do not belong to many Facebook groups. Yet there are women I have only met through this group whom I regularly turn to for input. Recently, one of the moms with whom I corresponded almost daily has largely dropped off due to a difficult pregnancy. I miss her as much as if I had a best friend living next door who moved to another state.
  • I did not know how much I could cherish the children who give us reason to have a Facebook group nor how invested I would feel in their developmental milestones. Videos of crawling, walking, talking, straw-sipping babies have me cheering in my seat at my computer as if I was watching the Chicago Cubs win the World Series.
  • I certainly did not expect my heart to be broken.

Then one week, in June of 2014, three babies died. Baby Fiona died after complications from her second heart surgery. Baby Ryder was fine when he went to bed, had a fever and rash in the morning and was gone by two in the afternoon. And Baby Annie. Baby Annie was not given a heart transplant, for reasons that remain unclear, and her family—mother, father, and two older sisters—have watched her progressively become weaker and bluer. She died early this morning.

Bad things happen all over the world each and every day and it is not humanly possible to feel the appropriate amount of grief for each loss. The deaths of these three babies hits home, however, and I do not recall a week in which I have cried so much and so hard for people I have never met, other than on Facebook.

“Why so many all at once?” my 13-year-old son, Jules, asked me as I wept over Baby Annie’s last photos. I told him I don’t know, but if a heart cannot be fixed, perhaps two years is a typical life expectancy.

The Hearts of Our Children

Forty percent of babies born with Down syndrome have some form of congenital heart disease. Some are easy fixes such as small holes that today can be surgically patched or sometimes even close on their own. Others are severe and may be beyond surgical repair, in which case the only option for survival is a heart transplant.

Baby Annie’s Facebook page stated the only thing that would save Annie’s life was a heart transplant but because she had Down syndrome, she was not placed on the donor list. The outrage of families whose children have DS has been potent. A petition appeared on Change.org asking President Obama to outlaw transplant discrimination for those who have developmental disabilities.

A day or two later, the National Down Syndrome Congress posted the following:

In 1996, Sandra Jensen, a 34-year-old woman with Down syndrome, needed a heart-lung transplant to survive. As far as anyone knew, she would be the first patient with Down syndrome to receive an organ transplant, and initially she was denied. Along with her doctor and her family, Sandra had to fight for the right to receive a transplant. The case gained nationwide attention, arguing that Down syndrome should not be enough to automatically deny a patient a transplant. Sandra won. In January, 1996, she received the requested transplant at Stanford University Medical Center. Her case was seen as a test of whether hospitals could use blanket categories to deny treatment. Since the passage of the Americans with Disabilities Act and the establishment of related federal regulations, discrimination against people with disabilities in medical treatment is prohibited.

Today, there is an internet petition (change.org) asking the President of the United States, “Why are children with Down syndrome not considered for organ transplants?” While we love grass roots advocacy, we want to set the record straight by saying it is not true that people with Down syndrome are automatically denied life saving treatment based on their diagnosis of Down syndrome today.

Making decisions around organ transplantation is a terribly complicated process, and the supply of organs for donation is quite limited. People are denied transplants for a variety of reasons. A patient who feels he is being denied solely on the basis of Down syndrome needs to appeal through the hospital system.

Make today the day you sign up to be an organ donor, and help more people receive the organs they desperately need.

Yes, organ transplantation is a complicated process with many factors necessarily taken into consideration. Yet there seems to be ample evidence and agreement that “soft” bigotry exists when it comes to placing a person with a developmental disability on a transplant list. Anecdotally, more than one mom on my Facebook group has had a cardiologist tell her that should all other options fail, a child with DS would not make it on the heart transplant list because a person with a developmental disability cannot be expected to follow through with the extensive post-operative care. (Hello? A two-year-old with or without Down syndrome is not the one responsible for the post-operative care, the caregivers are.) Yes, it is illegal to discriminate but at the end of the day the facts overwhelmingly point to inconsistencies in how doctors decide who to place on the donor lists and given the high proportion of congenital heart defects in children with DS, a disproportionately low number of people with DS make it onto the lists.

When we attended last summer’s NDSC convention, one of the biggest takeaways for me was how so many medical professionals in the United States have arcane and patently wrong notions about what it means to have Down syndrome. In the days after the convention I wrote “Fully Human and in Need of a Civil Rights Movement,” highlighting, in part, the existing discrimination against the developmentally disabled. It has been nearly a year since we attended our first NDSC convention and I have only become more aware and, yes, outraged, at the discrimination against people with developmental disabilities that continues largely unquestioned.

Max, whose professional paths, first as an English professor and later as a lawyer, have made him a stellar researcher, was on the computer until very late last night, trying to make sense of the organ transplant list issues. When he came to bed, he said, “Baby Annie will be the Rosa Parks on this issue, Holly; she will not die in vain.” I hope he is right and that the numerous conversations begun during her prolonged suffering and now, after her death, have infused momentum into individuals, groups, and national organizations to end disability bias in organ transplants.

There are so many details about Baby Annie’s medical journey that are unknown to the public. I read that a national Down syndrome organization was ready to advocate for her to be put on the list until they learned of further medical complications in her case. However, the fact that a national Down syndrome organization has as part of its mission the advocacy of organ transplants for people with DS underscores that soft bigotry is a pervasive and ongoing problem, which kills our children.

What We Can Do

Awareness is the first step to solving any problem. Please share this post, the posts of others and, certainly the articles linked here. And, as always, speak out to your politicians, many of whom may not even be aware a problem exists, just as I was unaware until these sweet babies left us.

Baby Fiona’s family started a wonderful non-profit after one of Fiona’s earlier hospitalizations. Fiona’s Hope Totes are care packages for families experiencing an unexpectedly extended hospital stay with a sick child. As of now, I believe the program is just in Minneapolis-St. Paul, Minnesota where Fiona lived with her family. I can easily imagine it becoming a national non-profit. Please consider donating to this charity to honor Fiona and help other families as they face medical odysseys.

Baby Annie was in hospice care for the last several weeks, surrounded by her family, who needless to say, did not leave her side. A fundraiser has been established to help her family. Please consider contributing to this family who has loved so hard and suffered so deeply.

And, finally, please, please, please become an organ donor today, if you have not already.

(Kimchilatkes I miss your sagacious ability to tease through complicated issues now more than ever. Your voice is sorely missed and will return, I hope, very soon.)