October is Liver Awareness Month, which is the month touted by the American Liver Foundation to raise public awareness of the importance of liver health. More than 30 million Americans, or one in 10, suffer with some form of liver disease.
This month is set aside to recognize to the importance of liver health and the causes of liver disease. A healthy liver serves many vital functions, including breaking down, balancing and creating nutrients from food, storing energy, cleaning the blood, regulating blood clotting and fighting infections. There are more than 100 different liver diseases caused by viruses, genetics, autoimmune disease, excessive alcohol use, poor diet and obesity and reactions to medications, street drugs, or toxic chemicals. Many people with liver disease do not look or feel sick and are unaware that damage is occurring. Symptoms of liver disease can include nausea or vomiting, abdominal pain, fatigue, yellow-colored skin and eyes, dark urine and weight loss; however, symptoms can vary depending on the specific disease or cause of damage.
Dorfman family’s Children’s Organ Transplant Association story
This October, a Florida transplant family is celebrating their daughter’s now healthy liver and her 5th birthday while waiting for their toddler son to receive his new liver … and a second chance at life.
The Dorfman family of St. Johns, Florida, was thrilled to learn there was a baby on the way. Big brother, Cody, had been an only child for several years so the news brought great joy. Kennedy Anne was warmly welcomed to the Dorfman family in early October 2018. But little did they know that when COVID-19 started spreading across the United States a few years later, safeguarding their family from the pandemic would not be the biggest medical challenge they would face.
Dad Eric, a Marine veteran and a retired Suffolk County, New York, police officer and Mom Aly, a middle school math teacher, both had careers that were greatly impacted by the pandemic.
They had a son who was attending grade school while Kennedy went from infant to toddler within in the nation’s initial COVID-19 pause.
But like all families, even during a pandemic some things remained necessary to do — like annual doctor visits. This was the case in late December 2020 when Kennedy had her two-year-old check up with the family’s pediatrician. Like all other pediatrician visits with Cody and those with Kennedy, they anticipated a clean bill of health and then a quick trip home. Aly even remembers thinking that since Kennedy had mostly been healthy, maybe they should reschedule the appointment due to concerns about ‘going out’ amid the pandemic. It was incredibly fortunate Eric and Aly kept her appointment because they had no idea the medical challenge they were facing with their little girl.
Eric and Aly learned Kennedy’s blood work showed a very abnormal platelet count, especially when compared to the same number at her one-year-old check. They instantly knew something was not right. Then they received a call no parent should ever have to answer; Kennedy was being referred to pediatric oncology. Kennedy endured blood tests, CT scans and ultrasounds. The good news? No signs of leukemia were found, but the medical team discovered abnormal liver function levels. They were next referred to a pediatric GI specialist for screening but before that appointment, Kennedy started throwing up bile and was rushed to the local ER. The ER team confirmed her liver function was worsening but decided she was stable enough to return home with her parents since she had a follow-up appointment scheduled the next day with the GI specialist.
Eric and Aly quickly put some family medical history pieces together and remembered that Kennedy’s grandfather and great uncle had both passed away from a rare, genetic disorder that affects the liver called Alpha-1. Fearing the worst, they requested Kennedy be tested for Alpha-1 Antitrypsin Deficiency.
Alpha-1 Antitrypsin Deficiency is a hereditary disorder characterized by reduced levels of a blood protein produced in the liver. It is generally thought that liver disease associated with this disorder is not caused by the Alpha-1 deficiency in the bloodstream, but by excessive amounts of Alpha-1 stuck in the liver cells. For children who suffer with progressive liver damage due to this disorder, a liver transplant is currently the only option for long-term survival. In these pediatric patients, a transplant completely replaces the liver cells and corrects the protein abnormality.
Just two days before ringing in 2021, Eric and Aly received the call they had been fearing. Their two-year-old toddler, Kennedy, had Alpha-1 Antitrypsin Deficiency and her liver was rapidly failing. The family was immediately referred to the liver transplant team at New York-Presbyterian Morgan Stanley Children’s Hospital in New York City, about 70 miles (or 2.5 hours driving time) from the Dorfman’s then home in Rocky Point. Adding to the immense stress and strain of Kennedy’s diagnosis and need for a life-saving transplant was this: Ali was pregnant with their third child whose anticipated arrival was sometime in March 2021.
Kennedy’s appointment with the liver team at New York-Presbyterian took place on Jan. 5, 2021. Her liver transplant evaluation followed a few weeks later on Jan. 27. During this two-week window, Eric and Aly started researching various online support groups to quickly learn as much as they could from other parents who were travelling similar journeys. Two online groups became immensely helpful and provided a glimmer of hope during these stressful weeks of waiting. Both online groups had members who were part of the Children’s Organ Transplant Association. Eric and Aly were encouraged by their new online support networks to reach out to COTA because while they were reading lots of varying opinions about pediatric liver transplants, everyone consistently agreed on one fact … it was going to be expensive and medical bills piled up for all families including those with solid medical insurance coverage.
On Jan. 28, 2021, Eric did an online search and found COTA’s Get Started link (https://cota.org/get-started/), which he completed and submitted to learn more about this organization. COTA’s Family Outreach Specialist reached out to Eric to answer any questions he might have. He indicated they were overwhelmed with the amount of information they had received in a very short period of time. Eric shared that just the day before at his daughter’s transplant evaluation, they paid four separate co-pays, drove nearly 70 miles to the transplant center and back home, encountered tolls to the appointments and on their return home, and had to pay $31 to park … on top of deductibles, insurance premiums and prescription costs. And they were less than 30 days into their daughter’s diagnosis. The next day, Jan. 29, Eric and Aly completed and sent their signed agreement to COTA’s Indiana headquarters, and the Dorfman family officially became part of the COTA Family and Kennedy became a COTA Kid.
The Children’s Organ Transplant Association uniquely understands that parents who care for a child, teen or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
On Feb. 5, 2021, Kennedy was officially listed for a liver transplant. Four days later, a COTA fundraising specialist trained the family’s group of volunteers via telephone due to COVID-19 so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Team Kennedy was launched, and the website was immediately available for online donations to assist with transplant-related expenses.
Eric and Aly started posting on the COTA-provided website almost immediately. It proved to be the best way to keep a large circle of family, friends and work colleagues connected and updated about the family’s transplant journey.
On Feb. 14, 2021, they blogged on the COTA for Team Kennedy website: “Today is National Donor Day! We are so grateful to those who have contacted us for more information on how to be a living donor for Kennedy. Kennedy’s blood type is O+, which means she can only receive from O+ or O-. General guidelines for becoming a living donor include good health, preferred age under 40 (although age will not exclude anyone; this is because typically with age, our livers stiffen a little), no prior liver disease, non-fatty liver, and being able to heal for 6-8 weeks post-surgery. We are hopeful that Kennedy’s Aunt Kelly will be a match. The screening process is very in-depth, so doctors will only screen one person at a time. We should know more in the next week or so and will keep you all updated. This Valentine’s Day, our hearts are so full; thank you all for the love, support, and for your generosity.
On Feb. 19th: “We Are One Step Closer! Kennedy’s transplant team and Aunt Kelly’s living donor team met this morning to review all test results. Aunt Kelly is considered a match! But because Alpha-1 is genetic, Kelly is required to have a biopsy done next week in order to ensure she does not have any preliminary signs of symptoms/issues due to Alpha-1 herself. This extra step will ensure that her liver will not suffer after surgery. Kennedy is scheduled for pre-op next Friday. If all goes well, surgery is scheduled for the first week in March.
On Feb, 27: “It is finally official! Next week, our precious Kennedy will receive the gift of life. Her amazing Aunt Kelly is a perfect donor match. Post-transplant care is a lifelong journey, but Kennedy is so strong and brave now, we can only imagine all she will be doing when she is healthy very soon. Yesterday, we traveled into the city for Pre-Op and to meet with the most amazing surgeon. While there were lots of tears, Kennedy braved the 12 tubes of blood needed. All of the bloodwork, ultrasounds, CT scans, EKG, etc. bring a lot of anxiety and fear at the moment, but this Brave Warrior is back to being herself just moments after knowing she is done. She ended today’s visit by giggling with her surgeon and then she left skipping and counting the stars in the hallway. Despite all the tests and poking, she still loves to play doctor when she gets home.
On March 3: “Yesterday Kennedy and her aunt Kelly had their surgeries; Kennedy was in the operating room for nine long hours. The living donor team surgeon said that Kennedy’s liver was in worse shape than expected and that Aunt Kelly came to the rescue at the right time; she’s our hero. Kennedy is resting, in some pain, but already demanding a juice box and waffles. Our sweet girl cannot actually eat for two days, but it is a good sign that she wants to. Her sassy personality is starting to shine through.
COVID regulations gave us five minutes together, then down to one parent … so after the longest day ever, comes the tough days ahead. We are so grateful for your love, support, and prayers to give us all the strength we need… especially for Kennedy as she finishes strong.
Kennedy was released from the transplant center on March 10, 2021, to return to the family’s Rocky Point home. And not a moment too soon. Little brother Caden James was born on March 17, just seven days after Kennedy was released to home post-transplant. Before the family could hardly take a collective breath from the whirlwind journey they had travelled, Caden was tested for Alpha-1 Antitrypsin Deficiency a few days after his birth.
The test results showed Caden, too, had this condition just like his big sister. Caden presented a bit differently, however, because he was very jaundiced. After six weeks of no improvement, his doctors were concerned that something else might be going on. After some special testing and a liver biopsy, it was discovered that Caden also had a non-genetic and rare liver condition called Biliary Atresia.
Biliary atresia occurs in a small number of infants when the bile ducts (the tubes inside and outside the liver) are scarred and blocked. Bile ducts carry bile from the liver to the gall bladder for storage and to the first part of the small intestine for use in digestion. In infants with Biliary Atresia, bile cannot flow into the intestine; therefore, the bile builds up in the liver and damages it.
It is a rare disease that affects about one out of every 12,000 infants in the United States. It was determined that Caden would need to undergo a life-saving surgery, a Kasai procedure, to remove his gall bladder and connect his liver directly to the small intestines. This surgery can delay a liver transplant, but it is anticipated Caden will one day be facing a liver transplant.
Eric points out, “We found out at the end of October 2020 Kennedy had abnormal blood work. And seven months later, Kennedy was home with a new liver … Caden was born and diagnosed with the same condition … and Caden had undergone a Kasai procedure because his liver had two things wrong with it. Wow. I just think it is important to keep in mind this all happened in a seven-month period.”
And in that same short amount of time, nearly $45,000 was raised for COTA in honor of Team Kennedy to assist with transplant-related expenses. It is something for which Eric and Aly are extremely grateful but sometimes find hard to talk about because they are beyond humbled by the outpouring of love and support shown to their family.
“In our scariest moment when we had just found out our precious baby girl would need a life-saving liver transplant, the Children’s Organ Transplant Association was there and put our hearts at ease,” they said. “Not only did COTA help ease the financial burden, they also helped us during a very dark time by highlighting amazing success stories about COTA families around the country. It is extremely reassuring to know that our kids’ stories will one day lift other transplant families up from a place of despair.”
On the first anniversary of Kennedy’s liver transplant, this message was posted and addressed to their large following of COTA supporters, family and friends: “Someone in one of our online liver support groups shared the following quote and it is important to share today because this COTA website and our connected Facebook page were what we relied on to get through the last year and to keep us positive and hopeful. ‘One day you will tell your story of how you have overcome what you are going through now, and it will be someone else’s survival guide.’”
Although the Dorfman family’s transplant journeys continue to be extremely challenging at times, they readily express their gratitude for each and every day with their children. They recently shared that family, friends, online support group members and organizations like COTA have made this journey more manageable and definitely easier to navigate.
“From day one, COTA has given us the hope and encouragement we need to continue pushing on. The amazing support and guidance COTA provides allowed us to forget about the financial burden associated with a life-saving transplant and to focus on taking care of our babies,” Eric and Aly said. “Every day we breathe a bit easier knowing that as Kennedy and Caden grow and need medical tests, blood draws, pharmaceuticals, another liver transplant, specialist appointments and much more … COTA funds will be available for countless transplant-related expenses … for two lifetimes.”