Family Spotlight

The Best Holiday Gift

Two years ago, Robert and Ana Anselmo received a precious gift. After waiting 13 years to have a child, beautiful baby Savannah was born on December 5, 2006. However, joy turned to devastation when at the age of four months, Savannah was diagnosed with biliary atresia, a deadly disease that attacks the liver. Her only hope was a liver transplant.

“Once we heard the news, we had no idea of the journey ahead of us, or that we would watch Savannah’s condition deteriorate as we waited for a donor,” said Robert Anselmo of Riverview, Florida. “We had no idea of the costs, both financially and emotionally, we would face. We had no idea on any given day there are 100,000 people on the nation’s organ donor waiting list. We had no idea one in three of these people die while waiting. We had no idea our daughter would get so sick that we would have to drop out of our lives, placing our jobs in jeopardy because we were at our baby’s hospital bedside 24/7.”

The Anselmos needed help. Even though the family had health insurance coverage, they were quickly informed that regardless of how ‘good’ their insurance was, they were facing a huge financial burden -- in addition to the pain and sorrow they were already facing on a daily basis. In the midst of this devastation, the Anselmos heard about the Children’s Organ Transplant Association (COTA).

“With the amazing assistance that COTA provided, we were able to pull together a group of friends and family who came together to raise funds for Savannah’s transplant-related expenses, and to raise awareness of the transplant journey our family was facing,” said Robert. Almost immediately, Robert and Ana became regular contributors to Savannah’s website journal at www.COTAforSavannahA.com, and just as quickly, bloggers from around the globe got online and started reading, and responding to, this family’s riveting words of frustration, pain, gratitude and hope.

After eight months of waiting, the Anselmos received ‘the call’: a match had been found.
On December 29, 2007, just days after her first birthday, Savannah received the ultimate gift ... a second chance at life.

According to Robert and Ana, “On December 29th, Savannah’s donor angel and donor family gave Savannah something that we couldn’t. Savannah is with us today, getting ready to celebrate her second Christmas in grand style, because of this selfless gift. Savannah has become our ‘Warrior Princess’ because of the strength she has shown to so many. Our donor family’s decision gave us the gift of being able to watch our little girl grow stronger in body and spirit each day.”

Even though this holiday season marks Savannah’s one-year transplant anniversary, the COTA team is still actively fundraising. Robert and Ana are keenly aware that Savannah’s liver transplant was not a ‘cure’, but instead a chance for the toddler to live, to love and to continue to fight.

“The possibility that Savannah will reject her liver is something she will face, and we will fear, for the rest of her life,” Ana said. “Savannah will always require specialized medical care because of her medications and immune-suppressed state, and she will always require follow-up care from her transplant team at The Children’s Hospital of Philadelphia, even though we live in Florida.”

The Anselmos are getting ready for the holidays. They are grateful for the ongoing support their COTA team continues to provide; they are grateful for their COTA website Journal readers and Guestbook visitors; and mostly, they are grateful for the selfless gift an anonymous family gave them last Christmas.

According to Robert and Ana, “On December 5, 2006, we gave birth to the most beautiful little girl in the world and our hearts were filled with joy. Four months later we heard the words ‘biliary atresia’ and our hearts dropped. A few days later we heard the words, ‘Your daughter needs a liver transplant’ and our hearts stopped. On December 29, 2007, our daughter was reborn through the miracle of an organ transplant … and on this day our hearts began to beat again.”

The Ultimate Gift ... Responding With Gratitude
By Robert and Ana Anselmo

How do you express your gratitude to all of the people who faithfully kept your daughter in their prayers? How do we thank all the people who baked cookies, drove motorcycles and swam laps in honor of Savannah to raise funds to help families with their transplant-related expenses? How do parents show appreciation to the doctors, nurses, pharmacists, secretaries, janitors, and all other hospital personnel who were part of saving your daughter’s life?

But most of all how do you say thanks to the family who made the selfless decision to save your daughter’s life?

The fact is that without the selfless gift of an organ donation, our daughter Savannah would not be here today. We would not have had all of the pleasures the past year brought us. We would not have the memories of her first steps taken soon after her transplant and of her learning how to eat solid foods and saying “yum, yum” after every bite. We would not have the memories of the most beautiful giggles in the world as she chases the waves at the beach, nor the memories of the most beautiful temper tantrums thrown just like every other “healthy” toddler. We would not have the memories of her grandmother’s face when she opened the door to see her granddaughter dressed in a pink tutu, surprising her on her 65th birthday. We would not have the memories of our Warrior Princess dancing madly and running to give us hugs and kisses. We would have neither the memories from this year, nor the possibilities of the memories we could make tomorrow.

Without our donor angel’s family setting aside their profound grief to make the selfless decision to save the lives of other children they had never met, our little Warrior Princess would not have lived to see her second birthday.

Not one day goes by … not one moment goes by … that we are not grateful for the gift of
life given to us. Not one day goes by that we do not think of our donor angel. Not one day goes by that we do not try to honor the gift we have been given through the raising of
our daughter.

On December 5, 2006, we gave birth to the most beautiful little girl in the world and our hearts were filled with joy. Four months later we heard the words “Biliary Atresia” and our hearts dropped. A few days later we heard the words, “Your daughter needs a liver transplant” and our hearts stopped. On December 29, 2007, our daughter was reborn through the miracle of an organ transplant ... on this day our hearts began to beat again.

Please visit www.COTAforSavannahA.com and leave the Anselmos your own
message of encouragement, or make a donation to help with Savannah’s ongoing transplant-related expenses.

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Transplants Today

Heart Pump Helps Children Waiting for Transplant

Even children at the top of the transplant waiting list can wait months before a suitable heart becomes available, and according to a current study, this small heart pump -- called the Berlin Heart Excor -- can help provide children a "bridge" to transplantation.

"We found the Berlin Heart was a very beneficial tool to have in our armamentarium," said study author Sanjiv K. Gandhi, MD, Surgical Director of the Heart Failure Program at Saint Louis Children's Hospital, St. Louis, Missouri. Results of the study were published in the current Cardiovascular Surgery Supplement of Circulation.

Currently, if a child awaiting transplant gets into serious trouble, surgeons will place the child on the extracorporeal membrane oxygenation (ECMO) machine. The problem with this device is that children have to remain immobile, which furthers physical deterioration. And, the device carries significant risks of complications.

There are already devices approved and in use for adults called ventricular assist devices, and the small version of a biventricular assist device is available for use in Europe, though it is not yet approved in the United States. Biventricular means the device does the work of both sides of the heart. The benefit of this device is that it allows children to be mobile. With special preparations, children can even leave the hospital with this device.

Dr. Gandhi said the primary reason the device has not been approved yet in the United States is that the market is small, and clinical trials are just now under way.

Dr. Gandhi's research included nine children between the ages of 12 days to 17 years, with an average age of 1.7 years. Most of the children weighed less than 80 pounds, according to the study. All of the children had severe heart failure from complex birth defects of the heart or cardiomyopathy, a weakening of the heart muscle that can occur as a result of
an infection.

Three of the children were already on ECMO, and six were already on mechanical ventilation. All of the children were placed on the Berlin Heart Excor between April 2005 and July 2007. One infant died of kidney failure soon after being placed on the device. The remaining children all survived to heart transplantation and were on the heart pump for an average of 35 days. Five patients had to have additional surgery, but there were no strokes, blood clots or bleeding complications in this group of children.

"These are fantastic outcomes, better than you see in many other centers," said Peter Wearden, MD, a pediatric cardiothoracic surgeon and Director of Pediatric Mechanical Cardiopulmonary Support at Children's Hospital of Pittsburgh at UPMC,
Pittsburgh, Pennsylvania.

But, he cautioned, "This is not a complete panacea." There are still risks, and he said that parents often focus on the potential benefits and do not always hear that there can
be complications.

Still, both Drs. Gandhi and Wearden felt this device is definitely an option for children awaiting transplant. "A significant number of children in this study would not have lived to transplant without this," said Gandhi.

The makers of the Berlin Heart Excor provided limited funding for the study; the bulk of the study funding came from St. Louis Children's Hospital, said Dr. Gandhi.

Source – www.washingtonpost.com

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Unrelated Cord Blood Transplants an Option for Children with Leukemia

Writing in the June 9, 2008, issue of The Lancet, John E. Wagner, MD, of the Blood Bone Marrow Transplant Program, University of Minnesota, Minneapolis and colleagues say the data, "supports the use of HLA-matched and one- or
two-antigen HLA-mismatched umbilical cord blood in children with leukemia who need transplantation."

The clinicians determined the outcomes of 503 children younger than age 16 with acute leukemia who underwent donor umbilical cord blood transplants; 35 received grafts that were HLA-matched, 201 received grafts that were
HLA-mismatched for one antigen; and 267 received grafts HLA-mismatched for two antigens.

They compared outcomes in these children with that of 282 similar children who received unrelated bone marrow transplants matched at the allele level for HLA-A, HLA-B, HLA-C and HLA-DRB1 (n = 116) or mismatched (n = 166).

Rates of acute graft-versus-host disease of grade 2-4 and 3-4 and chronic GVHD were not significantly different after transplants of matched or mismatched cord blood, allele-mismatched bone marrow, and allele-matched bone marrow.

Compared with allele-matched bone marrow transplants (the current standard of care) survival rates after five years were similar after transplants of umbilical cord blood
HLA-mismatched for one or two antigens and "possibly higher" after transplants of
HLA-matched umbilical cord blood.

Specifically, the five-year probabilities of leukemia-free survival were 38% after HLA-matched bone marrow transplants, 37% after mismatched bone marrow transplants, 60% after HLA-matched cord blood transplants, 36% after one-antigen mismatched cord blood transplant with low cell dose, 45% after one-antigen mismatched cord blood transplant with high cell dose, and 33% after two-mismatched cord blood transplant.

Dr. Wagner's group also reported that early transplant-related mortality was higher in children transplanted with a low cord-blood-cell dose and one HLA-mismatched cord blood graft (relative risk, 1.88) and in children given two HLA-mismatched cord blood grafts, independently of cell dose (RR, 2.31).

"Because better HLA matching and higher cell doses significantly decrease the risk of transplant-related mortality after umbilical-cord-blood transplantation, greater investment in large-scale banking is needed to increase HLA diversity," according to the authors.

"In the absence of a randomized trial, we cannot definitively state the relative efficacy of bone-marrow and cord-blood grafts, but the data supports the use of cord-blood grafts in children with acute leukemia," Dr. Wagner and colleagues concluded.

Source – www.medscape.com

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COTA News

$75,000 Donation Kicks Off Holiday Giving Season for COTA

Over the past few weeks, the Children’s Organ Transplant Association (COTA) has received several large grants and donations totaling nearly $250,000 -- including a $75,000 anonymous donation from an organization that supports COTA’s commitment to give transplant-needy children a second chance at life. These generous gifts signal the start of the ‘Holiday Giving Season’ for COTA’s children and young adults who are hoping this holiday season brings them a miracle.

According to the anonymous donor organization, “We feel strongly about the kind of support COTA provides, and we are very thankful there are organizations like COTA out there to help transplant families.”

“We are truly grateful for this generous donation, as well as others we have recently received in the form of several large gifts and grants," said Rick Lofgren, President of COTA. "Specifically, the $75,000 donation will be used to benefit our patient programs, which assist children who have urgent transplant and post-transplant care needs, and who now may receive a second chance at life. This gift will make an incredible difference in our efforts to assist patients."

In addition to the anonymous $75,000 donation, COTA has also recently received a
$50,000 anonymous gift from a family, a $40,000 grant from The American Legion’s Child Welfare Foundation, a $24,000 donation from the Wauwatosa Rotary Club Foundation, a $20,000 gift from the Dr. Solomon and Sarah Goldberg Fund, and $10,000 from the Operation Kids Foundation.

Nearly 80 patients were successfully transplanted during COTA’s 2008 fiscal year that ended June 30th. That brings the total number of COTA patients transplanted to more than 890 in the 23 years COTA has served transplant-needy families.

“Giving Hope ... Making Miracles is more than a slogan for the Children’s Organ Transplant Association -- it is a guiding vision,” said Lofgren. “I hope these gifts are just the beginning of holiday donations we will receive during the upcoming weeks.”

If you would like to help COTA give hope and make miracles this holiday season, please contact Rick Lofgren at 800.366.2682 or

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Services at No Cost and a Challenge Grant Program
The Children's Organ Transplant Association does not charge for its services -- 100% of funds raised are available for transplant-related expenses. Every fundraising campaign is eligible for up to $10,000 in challenge grant funds in the first year of fundraising. All funds raised in honor of patients are always used for patients’ transplant-related expenses.

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