I remember my boyfriend’s stunned expression, his numb instructions to call the number in the letter and “find out what
was going on.” I waited until he returned to work to break down and cry. My heart was broken.
I was quite familiar with Sickle Cell Disease. Chronic and incurable, I’d heard of few good outcomes for those who lived
with it. Like several other genetically transferred ailments, SCD is passed to children by two trait-carrying parents. Each
such pregnancy has a 50-50 chance of producing a child with the trait, a 25 percent chance of the child being born
trait and disease free and the same one-in-four chance of producing a child with the disease.
My head swirled. My immediate reaction was to call the number listed for additional information and tell someone –
anyone – the letter was wrong. Then I cried. Hysterically. All I’d ever heard was that SCD kids died by the time they were
12.
I called the contact listed in the letter and had to leave a message. Desperate, I reached out to mom, now 300 miles
away, and met with the sensitivity and rationality I knew her nurturing instincts and nursing career would offer. She
shared my shock and told me to pray.
We did. All evening my boyfriend and I held our baby, staring at him as if he would disappear before our eyes. Worried
each time Ethan cried that he was in pain of some sort. Silently frantic. Desperate for a corrected diagnosis.
The next afternoon, Dr. Wanda Shurney called. Apologizing profusely, she assured me, first of all, that I was not about to
lose my child. Then she quickly agreed to meet with me to allay my immediate concerns and schedule a formal
educational appointment.
Within days, I sat before the woman who became the first of many angels to cross my path. We sat face-to-face
discussing genetic probabilities and sobering possibilities. She couldn’t give me a definite prognosis. About 30 percent
of the children she dealt with required hospitalization three to four times a year. Another 30 percent wound up in the
hospital fewer than three or four times annually. The rest of her patients fell somewhere in between.
Hospital? I thought.
Yes. Not just for pain, which I was familiar with. But for any fever higher than 101 degrees when taken under the arm.
Wow.
My oldest son had been prone to ear infections. We were always in the emergency room it seemed. The thought of
visiting the hospital that frequently was staggering. Dr. Shurney also told me that the Children’s Hospital emergency
room considered a child labeled “Sickle Cell/fever” a number two in urgency – right behind trauma cases. I found that
both frightening and reassuring; knowing that he’d receive prompt attention, but because his fever could indicate a life-
threatening condition.
See, what I didn’t know was that the dire death rate I’d read about all those years before was due primarily to infection.
People with Sickle Cell have a compromised immune system that doesn’t allow them to fight off infection.
Consequently, many children died from simple things like ear infections.
At two months, we began to combat the chances of bacterial infection with a daily course of a prophylactic –
preventive – antibiotic. This, Dr. Shurney assured me, would give his body a head start against any infection that might
try to take hold, until we could get him to emergency and on an IV.
The first trip came too soon. Two months later, while visiting relatives in Chicago – four hours from home – Friday night
fussiness led to Saturday morning fever and a visit to a medical center unfamiliar with our hospital’s protocol. Instead of
admitting him away from home, we opted for a 72-hour antibiotic injection and started the long journey back.
Standard course of action at Children’s Hospital of Michigan is to start IV fluids and a broad-spectrum antibiotic.
Meanwhile, chest X-rays are taken to rule out (or confirm) pneumonia and blood work is sent to the lab to culture for 48
hours. He was admitted for the first of 11 stays that year.
At two to five days each, our hospital vacations developed character I didn’t know I had. There’s something about
having to restrain your infant for the fourth IV attempt that tears your soul apart. Eventually I learned that I had power
over my son’s treatment and I’d refuse to let him be poked more than twice.
“Call the IV team.” I’d demand and, hey, they listened.
I learned the underground tunnel system that linked our city’s largest medical center to the Wendy’s that saved my
sanity. Frosty-seeking missions at 2 a.m. helped clear my mind, stretch my limbs and allow me to cry outside my son’s
line of vision. When I returned to his room, I’d be physically exhausted, though mentally refreshed as I polished off
“dinner,” curled up on the cot and drifted off to sleep until the doctors made rounds a few hours later.
I adjusted to the constant interruptions. Rattled off answers to the same sets of questions repeatedly asked by varying
groups of doctors and interns. Found my way to the hallway storage rooms that housed clean linen and Dial soap. Even
learned to reset his IV when he rolled onto the tubing as he attempted to sleep.
Early in the morning, after rounds and before he awoke for the day, I’d sneak into the office to catch up on work. Pre-
email and laptops, my jaunts consisted of emptying my inbox and distributing copy for approval and design, returning
phone calls and slinking back out before anyone arrived.
Still, despite my efforts, my absences took their toll. By July, my boss had threatened to fire me if I “missed one more day
of work” – even though I took the time unpaid.
“If you force me to choose between work and my child, this job will lose.” I said it with my new sense of courage, earned
vicariously through my son’s battle. And I meant it. No fear matched that of possibly losing your child.
I managed to balance my work woes with a still shell- shocked boyfriend and an ambivalent nine-year-old (who wanted
to love his new brother, but was—understandably--resentful of the inordinate amount of attention the baby received
because of his illness). Together, we all held our breath through Thanksgiving and Christmas, so grateful that viruses and
fever spared us for the holidays.
My boss didn’t follow through on her threat, but I did decide to look for another job. The bill in sacrificed wages totaled
just over $8,000 by December. I needed more money and a more sensitive workplace. A year later, I found both.
Meanwhile, my boyfriend finally shook his ghosts, told his family about the baby's condition, and started checking out his
family medical history. About that time, Ethan’s immune system also seemed to find a little strength.
With 13 hospital stays under his belt, only two had proven to be caused by a bacterial infection. They occurred in a
heartbreaking back-to-back instance: Admitted one Wednesday night, the ER doctor immediately found signs of an ear
infection, started the antibiotics and found us a room. We headed home around lunchtime on Friday. That night, his
fever spiked again at 104 and we were back in the hospital until Sunday, recuperating from the same ear ailment.
The Ear Infection Incident was one of those biblical Job-like moments when mere humans are tempted to sink to their
knees in despair and curse genetics. But whenever my legs got shaky, so to speak, those angels I referred to earlier came
flying in to lift me up. I plodded through the uncertainty and exhaustion of Ethan’ first two years with a lot of help.
In addition to Dr. Shurney’s counsel and caretaking, I happened upon a group of special needs moms on a now-defunct
pregnancy web site called Storksite.com. Every day, a group of battle weary women would gather in cyberspace and
bang out our heartaches and happy moments from keyboards across the country. I met mothers of children with all types
of challenges – physical, mental, emotional. Some required surgical fixes, others could only be prayed for, most fell in
between.
I met Joyce in the Storksite sanctuary. Bonded by our boys’ sickle cell anemia, we corresponded for days, weeks, months
and now years. So much so, that when I married Ethan’ dad three years ago, Joyce drove four hours to attend our
wedding reception. That was the first time we ever spoke face-to-face.
Our friendship underscores the power of adversity. Lessons I learned in Ethan’ infancy and toddlerhood revolved around
the nature of his disease and the task of keeping him alive. These days, my attention has turned to teaching him to take
care of himself.
I pray, but, I still worry.
I wonder if our healthcare system will be fiscally stable enough to accommodate his needs twenty years from now. Will
he be healthy enough to hold down a good enough job with the affordable benefits that he’s likely to need? Will he find
someone who can love him for who he is in spite of what their children will inherit? Will the stem cell debate have
subsided enough to allow him access to this possible cure?
He’s old enough to wonder (and worry), too.
Each year, I fill out the standard emergency cards for school. And the physical education permission forms. On both I
write in capital letters – PLEASE CALL IMMEDIATELY IF ETHAN RUNS A FEVER. THIS CAN INDICATE A LIFE-
THREATENING CONDITION. HE MUST BE TAKEN TO EMERGENCY. It’s a perfunctory directive, followed explicitly by
most of his teachers. The one who deviated got more than an earful of my wrath. The incident earned Ethan the
principal's empathy and permission to use the classroom phone when he needed to reach me due to pain or illness.
For my child, the incident epitomized that uncomfortable middle ground of understanding that you’re different and not
wanting people to know. He’s at that age. Whereas cousins used to tease him because excessive laughter taxed his
bladder, now they giggle when his eyes are jaundiced. He wonders why they’re yellow sometimes, too. It’s tough to
explain and impossible to hide.
He’s thirstier than most kids, skinnier than everybody and usually eats less than his younger sister. When she ran her first
fever a few months back, he asked when I was taking her to the hospital. I almost hated to tell him that she didn’t have to
go.
“Oh,” he said, a simple response in such a heavy tone that I almost cried for him. The word seemed to sum up a
realization he’d never had to reach before. Hints of envy, hurt and shame hung in his voice.
We’d had the conversation about his blood about a year before. That it’s different; from the rest of the family’s, each of
his classmates’, all the people he knew. I had no comforting answer to his why and didn’t bother with the roll-of-the-dice
genes story. His sister’s sickness (some virus it turned out) brought our chat full circle and spurred me to action.
So, for the first time, Ethan went to camp this summer. A standard YMCA overnight experience, this excursion is
arranged by the Sickle Cell parents club at Children’s Hospital. Funded by grants from the governor’s office, the kids
attend free of charge.
My husband and I were a little nervous about sending him off, but it was time for him to know he’s not alone in the world.
I want him to meet other skinny, yellow-eyed boys, who get unbearable pain in their bones. Kids like him who’ve had
blood transfusions and morphine drips. Children whose fairly ordinary exteriors hide very special needs.
I think it worked. He returned energized, rambling about the boys he bunked with. There was one he hung out with and
another who stole his flashlight. His conversation was peppered with songs they sang, the hikes they took and how much
fun he had. No, he didn’t speak on the condition they shared and I was glad he didn’t. The trip showed him how normal
his differentness is among friends. For me, the week away confirmed a maturity I’ve taken for granted.
Over the last five years, Ethan has been hospitalized three times – far less frequently than in those early years, but he’s
been much sicker with the recent admissions. With gallstones and a cough-variant form of asthma added to his
“conditions” load, respiratory ailments plague him most. These illnesses have been tougher because he knows running a
fever means we’ll be headed for the hospital soon. And that translates to days away from family and friends, too many
pokes to count, homework to make up and the sinking fear of your body’s betrayal.
Yet, I’m not the only one who’s grown through this trial. Not only does he question the things he can’t control, but he
masters what elements he can. While it used to take me and two nurses to get him still for the IV insertion, he now grits
his teeth, clenches his fist and insists on watching the procedure. When there’s an option for where to take a poke, he
directs staff to the place that’s most comfortable for him. He can swallow a pill far better than his teenage brother and
clearly express the difference between gallstone, sickle cell and too-much-candy aches. He can even tell me whether it’
s an Ibuprofen or a Codeine pain.
My personal growth is a mixed assortment. Hospital stays are harder for me because I’m older and parental sleeping
arrangements, though thoughtful, are still uncomfortable. I have another child who worries about her sibling just as their
oldest brother does. My higher-level job is accommodating of our circumstances but more demanding in its day-to-day
duties.
But, all in all, life is brighter.
The faith that shouldered me through the discovery of Ethan’ sickle cell disease floats a determined optimism I refuse to
abandon. He’s a happy kid. For all that could be wrong (monthly hospitalizations, tri-weekly transfusions, strokes and the
like), he’s fairly healthy. School is a breeze. And our family is unfailing. (My father and stepmother, in fact, wound up
caring for him during his second to last hospital stay while we were in Vegas getting married. No honeymoon there….)
I have to believe that in Ethan’ time there will be a cure for this oldest-known genetic disease. That the woman who
makes him her own won’t have to worry about their babies’ blood. That if worst comes to worst, we’ve raised his brother
and sister to value family enough to help care for him once dad and I are gone.
I have been complimented as some type of hero by moms of children without our “baggage.” They question their ability
to do what I do. “How?” They ask. “Where do you find the strength?” I have done for my child what any good mother
would do: I love Ethan because he is mine. He is the baby God gave me.
Nine years into this journey, I can thank God for two things: First, for making me Ethan’ mom, because I have grown so
much through his existence. And, second, for making Ethan a “pistol” of a kid. He’s going to need every ounce of
gumption he’s got.
was going on.” I waited until he returned to work to break down and cry. My heart was broken.
I was quite familiar with Sickle Cell Disease. Chronic and incurable, I’d heard of few good outcomes for those who lived
with it. Like several other genetically transferred ailments, SCD is passed to children by two trait-carrying parents. Each
such pregnancy has a 50-50 chance of producing a child with the trait, a 25 percent chance of the child being born
trait and disease free and the same one-in-four chance of producing a child with the disease.
My head swirled. My immediate reaction was to call the number listed for additional information and tell someone –
anyone – the letter was wrong. Then I cried. Hysterically. All I’d ever heard was that SCD kids died by the time they were
12.
I called the contact listed in the letter and had to leave a message. Desperate, I reached out to mom, now 300 miles
away, and met with the sensitivity and rationality I knew her nurturing instincts and nursing career would offer. She
shared my shock and told me to pray.
We did. All evening my boyfriend and I held our baby, staring at him as if he would disappear before our eyes. Worried
each time Ethan cried that he was in pain of some sort. Silently frantic. Desperate for a corrected diagnosis.
The next afternoon, Dr. Wanda Shurney called. Apologizing profusely, she assured me, first of all, that I was not about to
lose my child. Then she quickly agreed to meet with me to allay my immediate concerns and schedule a formal
educational appointment.
Within days, I sat before the woman who became the first of many angels to cross my path. We sat face-to-face
discussing genetic probabilities and sobering possibilities. She couldn’t give me a definite prognosis. About 30 percent
of the children she dealt with required hospitalization three to four times a year. Another 30 percent wound up in the
hospital fewer than three or four times annually. The rest of her patients fell somewhere in between.
Hospital? I thought.
Yes. Not just for pain, which I was familiar with. But for any fever higher than 101 degrees when taken under the arm.
Wow.
My oldest son had been prone to ear infections. We were always in the emergency room it seemed. The thought of
visiting the hospital that frequently was staggering. Dr. Shurney also told me that the Children’s Hospital emergency
room considered a child labeled “Sickle Cell/fever” a number two in urgency – right behind trauma cases. I found that
both frightening and reassuring; knowing that he’d receive prompt attention, but because his fever could indicate a life-
threatening condition.
See, what I didn’t know was that the dire death rate I’d read about all those years before was due primarily to infection.
People with Sickle Cell have a compromised immune system that doesn’t allow them to fight off infection.
Consequently, many children died from simple things like ear infections.
At two months, we began to combat the chances of bacterial infection with a daily course of a prophylactic –
preventive – antibiotic. This, Dr. Shurney assured me, would give his body a head start against any infection that might
try to take hold, until we could get him to emergency and on an IV.
The first trip came too soon. Two months later, while visiting relatives in Chicago – four hours from home – Friday night
fussiness led to Saturday morning fever and a visit to a medical center unfamiliar with our hospital’s protocol. Instead of
admitting him away from home, we opted for a 72-hour antibiotic injection and started the long journey back.
Standard course of action at Children’s Hospital of Michigan is to start IV fluids and a broad-spectrum antibiotic.
Meanwhile, chest X-rays are taken to rule out (or confirm) pneumonia and blood work is sent to the lab to culture for 48
hours. He was admitted for the first of 11 stays that year.
At two to five days each, our hospital vacations developed character I didn’t know I had. There’s something about
having to restrain your infant for the fourth IV attempt that tears your soul apart. Eventually I learned that I had power
over my son’s treatment and I’d refuse to let him be poked more than twice.
“Call the IV team.” I’d demand and, hey, they listened.
I learned the underground tunnel system that linked our city’s largest medical center to the Wendy’s that saved my
sanity. Frosty-seeking missions at 2 a.m. helped clear my mind, stretch my limbs and allow me to cry outside my son’s
line of vision. When I returned to his room, I’d be physically exhausted, though mentally refreshed as I polished off
“dinner,” curled up on the cot and drifted off to sleep until the doctors made rounds a few hours later.
I adjusted to the constant interruptions. Rattled off answers to the same sets of questions repeatedly asked by varying
groups of doctors and interns. Found my way to the hallway storage rooms that housed clean linen and Dial soap. Even
learned to reset his IV when he rolled onto the tubing as he attempted to sleep.
Early in the morning, after rounds and before he awoke for the day, I’d sneak into the office to catch up on work. Pre-
email and laptops, my jaunts consisted of emptying my inbox and distributing copy for approval and design, returning
phone calls and slinking back out before anyone arrived.
Still, despite my efforts, my absences took their toll. By July, my boss had threatened to fire me if I “missed one more day
of work” – even though I took the time unpaid.
“If you force me to choose between work and my child, this job will lose.” I said it with my new sense of courage, earned
vicariously through my son’s battle. And I meant it. No fear matched that of possibly losing your child.
I managed to balance my work woes with a still shell- shocked boyfriend and an ambivalent nine-year-old (who wanted
to love his new brother, but was—understandably--resentful of the inordinate amount of attention the baby received
because of his illness). Together, we all held our breath through Thanksgiving and Christmas, so grateful that viruses and
fever spared us for the holidays.
My boss didn’t follow through on her threat, but I did decide to look for another job. The bill in sacrificed wages totaled
just over $8,000 by December. I needed more money and a more sensitive workplace. A year later, I found both.
Meanwhile, my boyfriend finally shook his ghosts, told his family about the baby's condition, and started checking out his
family medical history. About that time, Ethan’s immune system also seemed to find a little strength.
With 13 hospital stays under his belt, only two had proven to be caused by a bacterial infection. They occurred in a
heartbreaking back-to-back instance: Admitted one Wednesday night, the ER doctor immediately found signs of an ear
infection, started the antibiotics and found us a room. We headed home around lunchtime on Friday. That night, his
fever spiked again at 104 and we were back in the hospital until Sunday, recuperating from the same ear ailment.
The Ear Infection Incident was one of those biblical Job-like moments when mere humans are tempted to sink to their
knees in despair and curse genetics. But whenever my legs got shaky, so to speak, those angels I referred to earlier came
flying in to lift me up. I plodded through the uncertainty and exhaustion of Ethan’ first two years with a lot of help.
In addition to Dr. Shurney’s counsel and caretaking, I happened upon a group of special needs moms on a now-defunct
pregnancy web site called Storksite.com. Every day, a group of battle weary women would gather in cyberspace and
bang out our heartaches and happy moments from keyboards across the country. I met mothers of children with all types
of challenges – physical, mental, emotional. Some required surgical fixes, others could only be prayed for, most fell in
between.
I met Joyce in the Storksite sanctuary. Bonded by our boys’ sickle cell anemia, we corresponded for days, weeks, months
and now years. So much so, that when I married Ethan’ dad three years ago, Joyce drove four hours to attend our
wedding reception. That was the first time we ever spoke face-to-face.
Our friendship underscores the power of adversity. Lessons I learned in Ethan’ infancy and toddlerhood revolved around
the nature of his disease and the task of keeping him alive. These days, my attention has turned to teaching him to take
care of himself.
I pray, but, I still worry.
I wonder if our healthcare system will be fiscally stable enough to accommodate his needs twenty years from now. Will
he be healthy enough to hold down a good enough job with the affordable benefits that he’s likely to need? Will he find
someone who can love him for who he is in spite of what their children will inherit? Will the stem cell debate have
subsided enough to allow him access to this possible cure?
He’s old enough to wonder (and worry), too.
Each year, I fill out the standard emergency cards for school. And the physical education permission forms. On both I
write in capital letters – PLEASE CALL IMMEDIATELY IF ETHAN RUNS A FEVER. THIS CAN INDICATE A LIFE-
THREATENING CONDITION. HE MUST BE TAKEN TO EMERGENCY. It’s a perfunctory directive, followed explicitly by
most of his teachers. The one who deviated got more than an earful of my wrath. The incident earned Ethan the
principal's empathy and permission to use the classroom phone when he needed to reach me due to pain or illness.
For my child, the incident epitomized that uncomfortable middle ground of understanding that you’re different and not
wanting people to know. He’s at that age. Whereas cousins used to tease him because excessive laughter taxed his
bladder, now they giggle when his eyes are jaundiced. He wonders why they’re yellow sometimes, too. It’s tough to
explain and impossible to hide.
He’s thirstier than most kids, skinnier than everybody and usually eats less than his younger sister. When she ran her first
fever a few months back, he asked when I was taking her to the hospital. I almost hated to tell him that she didn’t have to
go.
“Oh,” he said, a simple response in such a heavy tone that I almost cried for him. The word seemed to sum up a
realization he’d never had to reach before. Hints of envy, hurt and shame hung in his voice.
We’d had the conversation about his blood about a year before. That it’s different; from the rest of the family’s, each of
his classmates’, all the people he knew. I had no comforting answer to his why and didn’t bother with the roll-of-the-dice
genes story. His sister’s sickness (some virus it turned out) brought our chat full circle and spurred me to action.
So, for the first time, Ethan went to camp this summer. A standard YMCA overnight experience, this excursion is
arranged by the Sickle Cell parents club at Children’s Hospital. Funded by grants from the governor’s office, the kids
attend free of charge.
My husband and I were a little nervous about sending him off, but it was time for him to know he’s not alone in the world.
I want him to meet other skinny, yellow-eyed boys, who get unbearable pain in their bones. Kids like him who’ve had
blood transfusions and morphine drips. Children whose fairly ordinary exteriors hide very special needs.
I think it worked. He returned energized, rambling about the boys he bunked with. There was one he hung out with and
another who stole his flashlight. His conversation was peppered with songs they sang, the hikes they took and how much
fun he had. No, he didn’t speak on the condition they shared and I was glad he didn’t. The trip showed him how normal
his differentness is among friends. For me, the week away confirmed a maturity I’ve taken for granted.
Over the last five years, Ethan has been hospitalized three times – far less frequently than in those early years, but he’s
been much sicker with the recent admissions. With gallstones and a cough-variant form of asthma added to his
“conditions” load, respiratory ailments plague him most. These illnesses have been tougher because he knows running a
fever means we’ll be headed for the hospital soon. And that translates to days away from family and friends, too many
pokes to count, homework to make up and the sinking fear of your body’s betrayal.
Yet, I’m not the only one who’s grown through this trial. Not only does he question the things he can’t control, but he
masters what elements he can. While it used to take me and two nurses to get him still for the IV insertion, he now grits
his teeth, clenches his fist and insists on watching the procedure. When there’s an option for where to take a poke, he
directs staff to the place that’s most comfortable for him. He can swallow a pill far better than his teenage brother and
clearly express the difference between gallstone, sickle cell and too-much-candy aches. He can even tell me whether it’
s an Ibuprofen or a Codeine pain.
My personal growth is a mixed assortment. Hospital stays are harder for me because I’m older and parental sleeping
arrangements, though thoughtful, are still uncomfortable. I have another child who worries about her sibling just as their
oldest brother does. My higher-level job is accommodating of our circumstances but more demanding in its day-to-day
duties.
But, all in all, life is brighter.
The faith that shouldered me through the discovery of Ethan’ sickle cell disease floats a determined optimism I refuse to
abandon. He’s a happy kid. For all that could be wrong (monthly hospitalizations, tri-weekly transfusions, strokes and the
like), he’s fairly healthy. School is a breeze. And our family is unfailing. (My father and stepmother, in fact, wound up
caring for him during his second to last hospital stay while we were in Vegas getting married. No honeymoon there….)
I have to believe that in Ethan’ time there will be a cure for this oldest-known genetic disease. That the woman who
makes him her own won’t have to worry about their babies’ blood. That if worst comes to worst, we’ve raised his brother
and sister to value family enough to help care for him once dad and I are gone.
I have been complimented as some type of hero by moms of children without our “baggage.” They question their ability
to do what I do. “How?” They ask. “Where do you find the strength?” I have done for my child what any good mother
would do: I love Ethan because he is mine. He is the baby God gave me.
Nine years into this journey, I can thank God for two things: First, for making me Ethan’ mom, because I have grown so
much through his existence. And, second, for making Ethan a “pistol” of a kid. He’s going to need every ounce of
gumption he’s got.
The Baby God Gave Me (cont.)
A Journey Through Sickle Cell Disease
A Journey Through Sickle Cell Disease
| (c) 2007 Stefanie Worth |
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