Links
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These links will take you places where you can learn more about Sidney,
her disease, and other interesting information!
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"Doctor Removes Organs to Reach Tumor"
Click Here to view the story about Dr. Kato (Sidney's Doctor)
Featuring Sidney
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See where Sidney has been featured here!
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"Family challenged as baby awaits 7-organ transplant"
"Family Challenged as Baby Awaits 7-organ Transplant" December 21, 2007
By Ruth Anne Maddox of The Shakopee Valley News
Babies are gifts from God but sometimes the pretty package is not as perfect on the inside as it looks on the outside.
Such is the case with Sidney Markie, a smiley 5-month-old from Shakopee who nearly died several times during the first nine weeks of her life as doctors worked to diagnose what was causing her little body to fail.
The good news is, they figured it out: Sidney has a rare genetic disorder called microvillus inclusion disease.
The bad news is, the 10-pound, 8-ounce little girl needs to have seven organs transplanted to hope for a viable future and physicians at Miami Children’s Hospital are among only a handful of doctors able to perform the surgery.
Sidney’s parents, Courtney Murray and Rick Markie, have been fighting for her life since before it was determined the multiorgan transplant was needed. Without the transplant, Sidney will not likely live past age 3.
The battle began on July 21 — just four days after Sidney was born. She was home from the hospital less than 48 hours when she started having difficulty breathing and felt cold to the touch. Murray said she took Sidney’s temperature and it was 91 degrees. She was sure it was just a faulty thermometer and sent Rick to the store for a new one. That one also showed 91 degrees. Luckily, a post-natal nursing visit was about to take place and, as soon as the nurse arrived, she called for an ambulance.
At the hospital, Sidney kept getting sicker and sicker. It wasn’t until the diagnosis was made that it was determined feeding Sidney is what was nearly killing her — with this disorder, the intestines can’t absorb any nutrients.
Getting a diagnosis was both a great relief and awful for the family since Sidney’s survival is dependent on a transplant.
“Right now, I don’t plan, I just live,” Murray said of waiting for the transplant. “Sidney’s just Sidney and it’s hard to think about reality. I plan for the future but I live for the day.”
Inside the Murray/Markie house, it looks like a typical home where there’s a newborn, with diapers and baby accessories in the living room for easy access. But there’s also a lineup of medications on an end table and a pump dispenser of hand sanitizer that everyone is reminded to use in case they want to touch the baby. And that humming sound? That’s the pump that supplies Sidney with her intravenous nutrition 20 hours a day. That life-saving IV feeding system also is ruining her liver and Sidney has the associated yellow tint of jaundice to her skin.
“We like to think of her as a normal baby,” Murray said. “You just get used to when you pick up Sidney, you pick up the backpack [that contains the IV pump].”
Other than growth, Murray said, Sidney is developmentally right on track.
“She’s a sweetheart,” she said as Sidney slept clutching her “blankie” on Murray’s lap. “She loves to smile and she’s started to laugh. She’s got such a sweet disposition.”
The best way to compare the early days of Sidney’s life with those of her older daughters (Summer is 9 and Samantha is 4) is easy: “There’s no comparison,” Murray said, noting that, while they try not to treat her differently than the other children, they don’t take her out in public very often because they don’t want her to catch a bug.
When her older daughters were babies, Murray said, a sneeze might make her think they were getting a cold. With Sidney, the thought process has changed to, “her white blood cell count is high, I wonder if she’s getting a cold?”
And, among other things, they’ve got to track her potassium and sodium levels and record daily weights — things that she really didn’t think about before. Then there’s Sidney’s baby book — it’s four three-ring binders full of medical terminology.
Because of the need for the home to be sterile and clean, the family has farmed out its dog and gerbil to relatives. So far, the two cats have been allowed to stay.
At first, doctors thought transplanting the baby’s small intestine would take care of the problem but further research revealed that traces of the disease have been found in other organs so it is recommended that Sidney receive a new stomach, pancreas, large and small intestine, liver and both kidneys.
“They have to do it all at once,” Murray said. “It truly is a one-shot deal — it’s all or nothing.”
To complicate matters and her faith, Murray said, the family has to pray for another infant to die from SIDS or an accident since the chances of a healthy baby dying at birth are unlikely and a sick baby’s organs are less likely to be useable.
If Sidney survives the transplant surgery, doctors have said that her survival rate is “very good.”
Murray said she has always had a strong faith and has asked, “Why?” many times in the past few months.
“I’ve always been a spiritual person,” she said. “God has a plan for all of us … [and] this has changed all of us. This puts things into perspective and we are more appreciative of what we have.”
Murray also said she would like to go back to school and become a nurse so she can help other people in the future.
Once Sidney received a diagnosis, her battle continued with insurance and the million-dollar baby is going to cost more than twice that by the time the surgery is completed.
Sidney has been declared “certified disabled,” so she now qualifies for Medicare. She currently is at the top of a transplant waiting list but she will need to get to Miami within three to six hours of a donor becoming available.
Partly because she is Sidney’s primary caretaker (with help from visiting nurses each week) and partly because she’s afraid of missing the opportunity for the transplant, Murray quit her job to be with her daughter, so the family is relying solely on Markie’s income right now.
“Sidney requires a lot of care, a lot of attention,” Murray said. “She’s fragile.”
Recently, after waging another insurance war, the doctors in Miami agreed to accept payment for their services at whatever the state of Minnesota deems it would pay if the surgery and care was taking place here.
However, since insurance will not cover the $10,000 medical helicopter flight and the family doesn’t have access to a private airplane, they have to hope that a commercial flight is available when they get the call.
And, once the surgery is performed, Sidney will have to remain in Miami for three to eight months — including a month-long stay in the intensive care unit — during recovery so the family will need to find temporary affordable housing there.
Murray said that she’s not a big fan of Michael Moore but, as she watched his movie, “Sicko,” which compares health care in the United States as provided by profit-oriented health maintenance organizations (HMOs) to free, universal health care in other countries, she saw a lot of similarities to the experience she was going through.
“It’s frustrating because there’s a lot that’s not covered,” Murray said. “People don’t understand the realities of insurance until you have a medical crisis. No average person could go through a financial situation like this and come out OK.”
The reality is that the transplant won’t take place for another four or five months because doctors want Sidney to complete her first complete rounds of immunizations. Typically, that would be around her first birthday, but the schedule has been upped for completion by the time Sidney is 10 months old. After the final immunizations are given, doctors must wait another 14 days before they can do the transplant — and a blood and tissue match donor must be located.
Because the condition is so rare, there is no funding for research and no organization to turn to for support.
Murray said that a benefit that will take place sometime after the holidays is being planned at Grace Church in Eden Prairie. She knows her family needs help, but she admits that it’s very hard to actually ask people for money.
A fund to help pay for Sidney Markie’s uninsured medical costs has been set up at U S Bank. Donations can be made in her name at any U S Bank branch.
In Michael Moore's "SiCKO" News
"One Baby, Seven Opportunities for Injustice"
Sidney needs a 7-organ transplant, but the real battle is with her insurance company:
Recently, after waging another insurance war, the doctors in Miami agreed to accept payment for their services at whatever the state of Minnesota deems it would pay if the surgery and care was taking place here.
However, since insurance will not cover the $10,000 medical helicopter flight and the family doesn’t have access to a private airplane, they have to hope that a commercial flight is available when they get the call.
And, once the surgery is performed, Sidney will have to remain in Miami for three to eight months — including a month-long stay in the intensive care unit — during recovery so the family will need to find temporary affordable housing there.
Murray said that she’s not a big fan of Michael Moore but, as she watched his movie, “Sicko,” which compares health care in the United States as provided by profit-oriented health maintenance organizations (HMOs) to free, universal health care in other countries, she saw a lot of similarities to the experience she was going through.
“It’s frustrating because there’s a lot that’s not covered,” Murray said. “People don’t understand the realities of insurance until you have a medical crisis. No average person could go through a financial situation like this and come out OK.”
WCCO Stories About Sidney
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Read or watch the stories that WCCO broadcasts about
Sidney and her disease here!
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11.11.2007 "Baby Seeking Transplant Getting Needed Evaluation"
"Baby Seeking Transplant Getting Needed Evaluation"
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11.18.2007 "Doctor Says Baby Needs Multi-Organ Transplant"
"Doctor Says Baby Needs Multi-Organ Transplant"
CLICK HERE to watch this story!
(WCCO) A Shakopee baby with an extremely rare disorder is facing a multi-organ transplant. Three-month-old Sidney Markie and her parents returned on Sunday from Miami, where she was evaluated for a small bowel transplant.
Sidney has microvillus inclusion disease which prevents her digestive system from working. Her family fought their insurance company to get treatment in Miami. She spent the week there getting tests.
Her doctor now recommends transplanting seven of her organs to decrease the chance of rejection.
"Dr. Kato specifically said that given the fact that we were able to get her down there sooner, that her chance for survival will be much better. This way it's not an emergency procedure, they can find the right match for her," said Courtney Murray, Sidney's mother.
While in Miami, they learned one of Sidney's kidneys is no longer functioning. Sidney's doctor would like to wait until she's one-year-old for the transplants, but may have to take action sooner if her condition worsens.
03.04.2008 "Baby Needing Transplant Heading To Miami Hospital"
"Baby Needing Transplant Heading To Miami Hospital"
CLICK HERE to watch the story!
A Shakopee family is on the way to Florida after receiving a potentially life-saving call to receive a transplant.Little Sidney Markie was born with a rare genetic disorder that keeps her body from absorbing nutrients through her small intestines.
Without a transplant, the disease can cause liver failure. The only place to get the transplant is at Miami's Children's Hospital. The family finally got the call they've been waiting for saying a donor is available.
"It's a good news thing but it's very scary adventure. We weren't expecting it," said Courtney Murray, Sidney's mother.
The family said they've been told with the surgery Sidney has a very good chance of living a normal life.
WCCO
03.09.2008 "Miracle Transplant Comes Through For Shakopee Baby"
"Miracle Transplant Comes Through For Shakopee Baby"
A 7-and-a-half-month-old baby from Shakopee, Minn. is recovering from a multi-organ transplant in Miami.
We first introduced you to Sidney Markie last October. She has a very rare disorder and needed several organs transplanted. Her family battled to get her treatment in Miami.
"Sidney is just an amazing little girl, full of smiles and laughter," said Courtney Murray, Markie's mother.
The child's family thought they'd have more time to prepare for a life saving multi-visceral transplant surgery. They had been planning to move to Miami in April and wait for a donor to become available.
Meanwhile, Markie's health had been deteriorating from microvillus inclusion disease, which prevents her from absorbing any nutrients.
Last Tuesday, a donor had been found.
"We got the phone call, I couldn't believe it," said Murray.
After 12 hours of surgery, Markie received transplanted small intestines, large intestines, liver, stomach, pancreas, bladder, and two kidneys -- in all, a total of eight organs.
The recovery process is extremely delicate and Markie has had some complications. One of the donor kidneys would not function, so it had be removed.
"It's not just day-to-day, sometimes hour-to-hour, even minute-to-minute with ups and downs. It's an extreme rollercoaster," said Murray, adding Markie's outlook is good.
Still, the family knows this is just the beginning of a new lifestyle for the little girl.
"This is really a lifelong battle Sidney will face," added Murray.
It's a situation the family is thankful to have, due to another family's generosity.
"I continue to pray for the family to heal during this difficult time. I hope they know their child will live on through Sidney," said Murray.
The donor was a 6-and-a-half-month-old boy from the Miami area.
Markie's family expects to be in Florida for recovery and follow-up treatments for several months. They're extremely thankful for all the prayers and support coming from Minnesota.
Reporting Maya Nishikawa
WCCO
10.20.2007 "Insurance Struggle For Baby With Rare Disease"
"Insurance Struggle For Baby With Rare Disease"
A Shakopee family is facing a heartbreaking struggle with a 3-month-old little girl who has a rare disease.
"She was the mystery baby," said Courtney Murray, the girl's mother.
Doctors now know what's causing Sidney Markie's life-threatening illness and how to treat it. However, getting the life saving surgery is still out of their reach.
"She's a very strong-willed girl," said Murray.
Looking into Sidney's big beautiful eyes, her parents don't see a sick little girl but each day is a struggle for this little girl. Sidney has a rare genetic disorder called microvillus inclusion disease. It prevents her from absorbing any nutrients or liquids through her small intestines.
"It's been extremely hard emotionally, physically, financially," said Murray.
Sidney receives all her nutrition directly into her bloodstream. She receives liquid nutrition called TPN through an intravenous feeding pump that she's hooked up to 20 hours a day. It provides all of her nutrients and fluids.
Even a small amount of food by mouth will put Sidney's body in distress. The intravenous feeding is only a temporary treatment. The TPN will eventually cause liver failure.
Her only chance for long-term survival is an intestinal transplant and the only place to get it is Miami's Children's Hospital.
"There's no other doctors that have the capability of doing this surgery on her, especially in a baby her size," said Murray.
The parents say they've been told medical assistance may not pay for the surgery. A spokesperson with the Minnesota Department of Human Services says state insurance does cover out of state procedures if deemed effective and necessary and the procedure is not available within the state.
The spokesperson could not comment on Sidney's case specifically. Sidney's parents are still waiting to hear if the surgery will be covered and they say their daughter has no time to lose.
"With her getting sick, it could happen tomorrow, it could just come on quickly. It's very, very frustrating," said Sidney's father Rick Markie.
Sidney's mother as spent hours on the phone trying to find some solution.
"I'm angry, not angry with my family but just angry at the fact that the system isn't working for us," said Murray.
However, they haven't lost hope. They say family and God are helping them get through each day.
"We just continue to fight. I tell everyone around me I won't let my daughter die," said Murray.
Sidney needs to be evaluated at Miami's Children's Hospital before she can get on a transplant list but she can't get evaluated until her insurance is approved.
The family's only hope is to find some way to get insurance coverage or somehow raise the money for the surgery.
The family said they've been told with the surgery, Sidney has a very good chance of living a normal life.
Reporting
Maya Nishikawa (WCCO)
10.23.2007 "Help Pours in for Baby Needing Transplant"
"Help Pours In For Baby Needing Transplant"
(WCCO) Minnesota parents hoping for a life-saving transplant for their infant
daughter are overwhelmed by the support they are getting.
On Sunday we told you about 3-month-old Sidney Markie. She has a rare genetic disorder called microvillus inclusion disease. It prevents her from absorbing any nutrients or liquids through her small intestines.
Sidney is in need of an intestinal transplant, a surgery that's only done in Miami.
Since the story aired Sidney's parents have gotten a lot of phone calls and e-mails offering to help.
They're hoping to start a fund soon but in the meantime they're busy trying to cut through the red tape to get Sidney's surgery now.
"It's heartbreaking especially since I try to care for her during the day and making these phone calls these people can hear this baby screaming. Unfortunately, I can't make phone calls and give her my undivided attention at the same time," said Sidney's mother Courtney Murray.
Minnesota's attorney general is helping Sidney's parents and Northwest Airlines has offered to donate air travel for the surgery.
Sidney's parents originally thought insurance wouldn't cover out-of-state surgery. Their provider, Blue Cross, said it's still getting information and will make a decision soon
11.06.2007 "MN Baby Dying As States Battle Cost Of Transplant"
"MN Baby Dying As States Battle Cost Of Transplant"
CLICK HERE to watch the story!
The family of a little girl in need of a life-saving transplant said their daughter is dying because the state of Minnesota and the state of Florida are battling over the cost of an intestinal transplant.
Four-month-old Sidney Markie was born with a rare condition that prevents her intestines from absorbing nutrients.
She is being fed intravenously but that eventually will lead to liver failure.
Sidney's liver is showing signs of stress and the little girl is visibly more jaundiced than she was 10 days ago.
"I am scared. I am getting frustrated. Its too overwhelming -- everything that is going on -- and it's just ... there are no answers," said Courtney Murray, Sidney's Mom.
Sidney has been declared disabled which means she is on full state medical assistance.
The University of Miami Children's Hospital is the only hospital that has successfully performed an intestinal transplant on an infant.
Reporting
Esme Murphy