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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Family Resources

Preventing Infection

The following are things you can do (or avoid doing) that will help prevent an infection for your child or young adult after a transplant is received.  Your family’s transplant doctor or nurse will tell you when some of these restrictions may be lifted.

• Stay away from people who are obviously sick with the flu, a cold or chicken pox.
• Make sure you wash your child’s hands with
  soap and water before eating and after going  
  to the bathroom.
• Make sure your child, or young adult, showers or bathes regularly.  Wash the incision as you would any other part of the body.  Do not use lotions or powders on the incision.
• Clean cuts and scrapes with soap and water, and apply an antiseptic and a bandage.
• Do not, under any circumstances, allow your child or young adult to change the litter in the cat box or birdcage without gloves.  This could cause a serious infection.
• Do not allow your child or young adult to garden, dig in dirt, or mow the lawn
  for six to eight weeks after the transplant without gloves.  This could cause a serious infection.
• If your child or young adult is in a building or outdoors where there is extensive construction and dust and dirt in the air, make sure he/she wears a surgical mask to prevent inhaling certain infectious agents that may be in the air.  It is better to avoid these areas as much as possible.
• Post-transplant patients must brush and floss teeth daily.
• Make sure to keep fingernails and toenails clean and trimmed.  For hard to manage or ingrown toenails, see a foot specialist.
• Talk to your transplant doctor about getting the flu vaccine and the pneumonia vaccine for your child.  These do not contain a live virus and are safe for post-transplant patients.
• Do not allow your child to get any vaccine that contains a live virus like the smallpox or polio vaccine.
• Talk to your doctor if someone in your house is going to receive a live virus such as the oral polio vaccine or diphtheria vaccine if your child or young adult has not already been vaccinated.
• Make sure your post-transplant child or young adult eats only thoroughly cooked oysters, clams or mussels, and avoid swimming in estuarine waters (where fresh and salt water mix) to minimize risk of serious infection from Vibrio vulnificus.  You can read more about the dangers of this bacterium at SafeOysters.org.
• Do not expose your child or young adult to cigarette smoke, either firsthand
  or secondhand.

Source: Beth Israel Deaconess Medical Center

For more information about Transplant Family Resources, please call Jackie
Tate or Rebecca McCall at 800.366.2682 or visit www.cota.org and click on
“Family Resources”.

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COTA Family News

COTA Reminders

Semi-Annual Statement Requests:  Remember that COTA families now have the opportunity to receive electronic versions of the semi-annual account statements (provided twice a year at the end of December and end of June).  Beginning in January 2012, if you would like to receive a statement of activity for the prior six months, you may send an email request to:  FamilyInfo@cota.org.   By the end of the same month you request the statement, a statement will be attached to the reply email.

Updates to Medical Insurance Premiums:  January is often the time when employers and insurance companies make changes to premium amounts.  If you are paying for medical insurance premiums for your family, remember that you can submit the patient’s portion for reimbursement.  For reimbursement, please submit a current policy breakdown or itemized bill that includes the amount paid for the COTA patient’s medical premium portion.  If the premium is deducted from your paycheck, please include a copy with the deduction amount circled on the form with your payment authorization form.

As always, everyone here is grateful for the opportunity to help ease the financial burden for our COTA transplant families.  Please call COTA at 800.366.2682 or email us at FamilyInfo@cota.org with any questions or concerns you might have about the reimbursement process.  Happy New Year!

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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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