"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.