Bloomington, Indiana – January 9, 2012 -- On January 25th, you can bet that one Hebron, Kentucky, family will be celebrating. The reason for the celebration? The anniversary of their toddler’s liver transplant … and his second chance at life.

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 25thyou 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.

The Children’s Organ Transplant Association is a national charity that provides fundraising assistance to transplant families. Since 1986, COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. 100% of all funds raised in honor of transplant patients are used for transplant-related expenses.
 

Bloomington, Indiana – November 7, 2011 -- November is National Adoption Awareness Month.  Seven years ago during the holiday season, Derrick and Colleen McQueen of Staten Island, New York, met a little boy named Devin, a ward of the state, who desperately needed a family … and a second chance at life. 

Born on October 23, 2003, Devin was diagnosed with Short Bowel Syndrome.  Due to Devin's medical needs and his birth family’s situation, he became a ward of the state of New Jersey and spent the first 13 months of his life in the hospital.  

Derrick McQueen tells their family’s amazing story of love and thanksgiving, in his own words.

“Devin came into our lives one morning in December 2004.  He was 13-months-old and in the pediatric intensive care unit at the Children's Hospital of New Jersey. Devin was very cute and interactive, but he was alone.  There was no family at his bedside.  Devin had lived in the hospital since birth due to a condition known as Short Gut Syndrome which caused parts of his small bowel to be missing resulting in poor digestion and a lot of diarrhea.  He was a ward of the state due to his mother's battle with drug addiction.  We immediately fell in love with him and decided this cute baby should not spend Christmas in the hospital.

The more familiar we became with Devin's situation, the more we thought we could make a difference in his life.  Devin deserved better than living in the hospital.  He deserved a home, a family; he deserved to play outside with other children in the sun and in the snow.  Most of all he deserved to be loved. 

Because Devin required special nutrition administered through a catheter, his care could only be entrusted to a caregiver with specialized medical training.  This is at least part of the reason that finding a home for Devin would prove challenging for the state agency in charge of his care.  But our home was specially equipped to care for Devin.  Though we had no special supplies at the time, my wife and I are a pediatric intensive care nurse and a physician respectively. Most importantly, we wanted to bring quality to Devin's life.

So my wife set out to accomplish this Herculean task. Getting the state agency to allow Devin to come home with us for Christmas was the first challenge.  Though we agreed this was a great idea and this was the true meaning of Christmas, we found that getting the state to act in such a brief window of time was a nearly impossible mission.  Through endless determination and countless hours, we finally got to bring him home.  It had to be somewhat shocking for a child who had only lived in the hospital until this point in his life.  His first car ride … his first time being outside … his first shoes and coat.  Devin loved the attention.  Upon arriving home, Devin was welcomed by our kids and extended family as though he was our biological child coming home from the hospital for the first time.  It was amazing how everyone came together to give this little boy a special Christmas.

Before we knew it, it was time to return Devin to the hospital.  We were all devastated.  Devin had a real Christmas.  He was hugged, kissed and loved.  He played outside.  He got tons of presents.  But the reality was Devin belonged to New Jersey and had to be taken back to the hospital.  We continued to visit Devin every day as we fought to bring him home for good.  We started to advocate for his care; he needed someone to oversee his daily medical needs.  This was no easy task.  We had no rights but knew what was in his best interest.  Several surgeries and several months later, we were able to bring Devin home for good.   Devin was approaching the age of two -- he was demanding and full of life.  We all had to adjust to having a toddler in the house.  Our other children were age eight and 11 so it had been some time since we had cared for toddlers. 

My wife and I had to change diapers every two to three hours because of his intestinal issues.  Devin was fed through a feeding tube 18 to 20 hours per day.  All evening family activities had to include planning for infusing Devin with his intravenous nutrition, a procedure that required sterility. 

The simple solution would have been not to do things as a family or to leave Devin at home during those times.  That would, however, have defeated our most important purpose which was to bring quality to Devin's life.  Everyone adjusted and we became experts on how to live with a child with medical needs.  As health care professionals, we understood that Devin's medical fragility could one day lead to his demise.  My wife and I knew that we were walking a tight rope with Devin.  In September 2006, a pediatric gastroenterologist told us Devin needed a bowel transplant to survive. 

By June 2007, Devin's bowel stopped working.  He was, for reasons that we still do not understand, no longer able to tolerate even fractions of the nutrition via his GI tract.  He was on full IV nutrition, which we knew would eventually cause his liver to fail.  Trying to manage his care during this time was becoming more difficult.  He had chronic belly pain, watery stool and was vomiting and gagging with everything he ate or smelled.  It was then we realized that a bowel transplant was our only shot at keeping Devin going.  In March 2008 we headed to Georgetown University Hospital to consult with a transplant team.  We were told Devin's only chance at survival was a bowel transplant.” 

The McQueen family knew that Devin’s eventual transplant and post-transplant care were going to be costly.  During the months of pre-transplant care, they reached out to the Children’s Organ Transplant Association (COTA) to ask for financial assistance.

According to Colleen and Derrick, “COTA gave us hope and support during a very difficult time in our lives.  Raising funds with COTA’s guidance gave us hope that one day our son would actually receive his transplant without crippling our family with a huge financial burden.”

In the early morning hours of February 22, 2009, Colleen McQueen received the call she had been waiting for.  They packed their bags and made the four-hour trip to Georgetown University Hospital.  At 11:30 pm that evening, after being kissed repeatedly, Devin was taken to the operating room.  Colleen and Derrick saw him at 8 the next morning after he received his small bowel transplant -- and a second chance at life.

Seven days post-transplant Devin was eating for the first time in his five-year-old life.  By Easter, the McQueens had returned home to New York and enjoyed a great summer as a family.  According to them, “A transplant is a miracle, and adoption is a miracle.  With Devin, we got to experience both.  We found out that we needed an entire community helping us to be able to deal with both of the miracles our family has been given.”

The McQueen family will be forever thankful.