Family Spotlight

A New Year = A Big Reason to Celebrate for a Kentucky COTA Family

Jonathan Robert Voorhees was born on May 4, 2009, much to the delight of his parents, Bill and Amber Voorhees, and his siblings, Savannah, Elizabeth and William.  He had a head full of dark hair and beautiful bright blue eyes.  According to his mother, with the exception of a little jaundice, he was perfect.

At Jonathan’s one-month check up, his pediatrician noted that he was still a bit jaundiced, but told his parents not to be concerned as it was probably just “breastfeeding jaundice” that should go away on its own. Unfortunately it did not go away.  At his two-month check-up, Jonathan’s blood work indicated a high bilirubin level and they were sent to Cincinnati Children’s Hospital Medical Center.  Within hours, Bill and Amber were given a preliminary diagnosis of biliary atresia and were told to prepare the infant for a liver biopsy.  According to Amber, their lives changed forever that day.

Baby Jonathan underwent exploratory surgery to confirm the diagnosis of biliary atresia.  About an hour into the surgery doctors found only faint indicators of where Jonathan’s bile ducts used to be, but that they were no longer working and had all but deteriorated.  Jonathan’s body had no way to drain bile, which meant his liver was being poisoned.

By November, Jonathan completed a transplant evaluation, and the family understood that a liver transplant was coming … and coming fast.  To make matters more difficult, eating made Jonathon so sick that he would not eat.  So he was diagnosed with failure to thrive and required a feeding tube.

By December 2009, things got even worse.  The doctors found a serious complication from the liver disease -- a blocked vein in his liver could lead to acute liver failure at any point.  Jonathan was officially listed for a liver transplant on December 11th.  The family was
able to celebrate Christmas together in their own home, but their thoughts were on
the transplant.

From that point, the family started the waiting game.  The majority of January 2010 was spent in the hospital as Jonathan became sicker and sicker.  On the night of January 24th, when Jonathan was only eight-months-old, Bill and Amber got the call to come to the transplant center.  “We were so happy and yet so sad when a liver became available.  We knew that somewhere out there another family was mourning the loss of their baby at that exact moment.” 

The transplant came not a moment too soon; Jonathan was much sicker than even the doctors realized.  The surgery was a success.  Just three weeks after the transplant
(and with only one minor case of rejection) Bill and Amber were able to take their little fighter home.

Once they were home, and their family was reunited, Bill and Amber began to realize the financial implications of the transplant.  According to Amber, “Despite having insurance that covered most of Jonathan’s medical expenses, we were facing thousands and thousands of dollars a year in uncovered medical bills.  This is when we reached out to the Children’s Organ Transplant Association (COTA) for help and for hope.”

“COTA has enabled us to focus our efforts on caring for Jonathan and not on worrying about how we are going to afford to pay the medical bills,” said Amber.  “Just like any other parent, our wish for Jonathan is that he can live a healthy and happy life and grow up to make a positive difference in this world.  COTA has given us hope that our dream for him will become a reality.”

“The simple fact that Jonathan is running around our home and living life to the fullest is the greatest miracle we could ever ask for.  Through this journey, we have learned that miracles happen around us all of the time -- some big and some small -- and most of the time in the form of simple acts of kindness from others, like those from our COTA team
of volunteers.”

At Jonathan’s transplant party on January 25th you will surely find him playing with anything he can get his hands on, and staying close to his brothers and sisters.  It will undoubtedly be an amazing celebration of life for this family who constantly gives thanks for their little miracle, Jonathan, and for their COTA team of volunteers.

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Transplants Today

Babies Put on Transplant Lists Before Birth Get Hearts Faster

A prospective, multicenter, events-driven data registry was used to determine outcomes of babies listed for heart transplantation before birth.  The researchers’ search identified 4,365 children added to a heart transplant list for the study period of 1993 to 2009.  Unborn babies comprised 1% and newborns (aged 0 to 30 days) comprised 19.8% of those listed.

The most common indication for fetal listing for heart transplant was congenital heart disease, with left-side obstructive lesions predominating.

Unborn babies were listed for an average 18 days before delivery.  About half of the babies listed before birth waited one month after birth to receive a transplant while newborn babies waited three months on average.  The median wait-list time to heart transplant after birth was 25 days for babies listed before birth versus 39 days for newborns.

Survival did not differ for babies listed before or after birth (P=.2).  Multisystem failure was the most common cause of wait-list death among babies listed before birth; and cardiac failure was the most common cause among babies listed after birth.

Of those who survived the heart transplant, mean age at transplant (50 days vs. 66 days), sex (78% female vs. 62% male) and race (89% vs. 79% white) were not different between the unborn and newborn listed groups.

“Babies continue to have the highest chance of dying while waiting for a heart transplant due to the shortage of donor organs.  Listing a fetus with severe heart disease is one way to try to deal with this shortage, although only a few patients were actually delivered early after receiving a donor offer while in utero.  This strategy does not apply to most fetuses but can be considered in specific types of cases because the outcomes after transplant are good,” said Jennifer Conway, MD, from the Hospital for Sick Children, Toronto, Canada.

“Our hope would be that studies such as this can contribute to increasing community awareness about the difficult outcomes for babies in need of heart transplants and underscore the importance of organ donation,” Dr. Conway said.  

Future research may focus on which fetuses would benefit most from early transplant listing and how to determine whether a fetus should undergo surgery after birth,
she added.                                                                                                       

Source – www.cardiologytoday.com

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Some Donors of Bone Marrow Can Now Be Paid

The court said that new technologies for transplanting bone marrow make the tissue more like blood and less like an organ.  The National Organ Transplant Act prohibits compensation for human organs, such as kidneys, but allows payment for renewable tissues such as blood.

A California nonprofit organization (MoreMarrowDonors.org), parents of sick children and a physician sued U.S. Attorney General Eric Holder in 2009, challenging the ban on compensation for bone marrow donations.  They argued that allowing financial incentives for bone marrow donation was crucial because of the extreme difficulty of finding a genetic match.

The suit said the ban violated the U.S. Constitution because it treated bone marrow as a "human organ" while allowing payments for blood, sperm and eggs.  The government said that payments could lead to exploitation of people in financial need.

A California district court sided with the government, but the 9th Circuit Court of Appeals disagreed. The court found that new methods of harvesting stem cells from the donor's blood stream rather than the bone did not amount to an organ transfer.

"Once the stem cells are in the bloodstream, they are a subpart of the blood, not the bone marrow," Judge Andrew Kleinfeld wrote on behalf of the three-judge panel in the 9th Circuit Court of Appeals.

Charles Miller, a spokesman for the Justice Department, declined to comment on
the litigation.

"This decision fundamentally changes how deadly blood diseases will be treated in America," said Jeff Rowes, a Senior Attorney at the Institute for Justice and Lead Attorney for the plaintiffs.  He said one of the biggest challenges has been encouraging people identified as a rare match to go through with the donation.

MoreMarrowDonors.org had wanted to offer donors $3,000 in scholarships, housing allowances or gifts to charities of their choice.  Rowes said any form of compensation is now available to recruit donors, and patients can now ask their insurance companies to pay donors identified as a match.                                                               

Source – www.medscape.com

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COTA News

Tips for Referring Patients to COTA

The Children's Organ Transplant Association (COTA) wants to say 'Thank You' for referring transplant families to our organization.  In fact, referrals from transplant professionals account for the majority of COTA's patients.

The most common way for transplant families to learn about COTA is through you, a transplant professional.  Here are some tips for referring patients to COTA -- these tips may be helpful during your pre-transplant evaluations:

• Explain that families who do organized fundraising typically navigate the transplant process with less stress.
• Advise families to consider the types of transplant-related expenses they will have to cover including loss of income, meals, lodging, prescription medications, etc.  Ask them to use the Transplant Expense Estimator found on the COTA website.
• Provide details about key features of COTA, which include services provided free-of-charge, comprehensive orientation processes, training for campaign volunteers and no-cost customizable campaign websites.
• Provide your transplant families with COTA's family materials.  Feel free to request these materials by visiting www.cota.org, or by sending an email to jennifer@cota.org.

Thank you for spreading the word about COTA so that we can continue assisting transplant families nationwide.  We look forward to hearing from you.  COTA’s staff is here, just a phone call or email away, ready to make your families’ road to transplant a little easier.  Let us know if there is a tool or printed piece that would be helpful to the transplant families you serve.

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Welcome to the COTA Family

These are recent additions to our COTA Family. Transplant Professionals referring
patients to COTA play a vital role in Giving Hope and Making Miracles for families of transplant-needy patients.

	Born on May 11, 2004, Keller Lai was diagnosed with Chronic Granulmatous Disease. The doctors at the National Institutes of Health in Bethesda, Maryland have recommended a life-saving bone marrow transplant. An estimated $25,000 is being raised by COTA for Kellar L volunteers.
	Born on December 28, 2009, Tyler Mason Peryea was diagnosed with Hemophagocytic Lymphohisticocytosic (HLH). The doctors at the Cincinnati Children's Hospital in Ohio, have recommended a life-saving bone marrow transplant. An estimated $40,000 is being raised by COTA for Tyler Mason P volunteers in Cumberland, Rhode Island.
	Born on January 29, 2010, Kaden McCormick was diagnosed with kidney failure. The doctors at Primary Children's Hospital in Salt Lake City, Utah have recommended a life-saving kidney transplant. An estimated $100,000 is being raised by COTA for Kaden M volunteers in Roosevelt, Utah.
	Audric Beaulieu was diagnosed with Biliary Atresia. The doctors at the Texas Children's Hospital in Houston, performed a life-saving liver transplant on October 10, 2011. An estimated $50,000 is being raised by COTA for Audric B volunteers in Missouri City, Texas.
	Born on January 9, 2010, Khalil Cruz-Hubbard was diagnosed with neuroblastoma. The doctors at the University of Minnesota Children's Hospital in Minneapolis have recommended a second life-saving stem cell transplant. An estimated $250,000 is being raised by COTA for Khalil C volunteers.
	Born on May 20, 1995, Evan Aronsen was diagnosed with renal failure. The doctors at UCSF Medical Center in San Francisco, California have recommended a life-saving kidney transplant. An estimated $55,000 is being raised by San Pablo's COTA for Evan A volunteers.

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COTA Fast Fact

Services Provided at No Cost
The Children's Organ Transplant Association does not charge for its services -- 100% of funds raised in honor of patients are available for transplant-related expenses.

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