October 1, 2025 — 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 Americans, suffer with some form of liver disease. This October, a Music City transplant family is celebrating their daughter’s now healthy liver and is extremely grateful for the family who donated their child’s organ to save their toddler’s life.
Emily and Michael Daniel of Nashville, Tennessee, were excited to learn they were expecting their first child. Emily experienced a healthy, happy and uncomplicated pregnancy. Baby Rose was born in January 2022; the new parents were instantly smitten. They were able to take her home the same day she was born to start their new ‘family of three’ life together. But just two weeks after her birth, Rose was diagnosed with a rare liver disease. Emily and Michael were stunned. Nothing could have prepared these new parents for the journey they were facing with their precious daughter. At her two-week check-up, she had lost weight, was still slightly jaundiced and had some ‘paler than normal’ stools. Their pediatrician did bloodwork that day and called them because Rose’s direct bilirubin level was too high and they needed to get to the hospital. He also said to prepare for a long day, including waiting on the results of an ultrasound and other tests that needed to be performed.
“We will never forget hearing the news,” Emily said. “Our pediatrician told us her gallbladder and bile ducts were not visible and he was concerned about a rare liver disease called biliary atresia.” Biliary atresia, which affects 1 in 20,000 newborns, is a blockage in the tubes (ducts) that carry bile from the liver to the gallbladder. This congenital condition occurs when the bile ducts inside or outside the liver do not develop normally. Currently it is not known why the biliary system fails to develop normally. In babies with biliary atresia, bile flow from the liver to the gallbladder is blocked. This can lead to progressive liver damage, cirrhosis and ultimately liver failure. Only a few decades ago, babies died from this diagnosis.
“We were devastated, heartbroken, terrified … and our baby was only two weeks old,” Emily said. Rose was admitted to Monroe Carell Jr. Children’s Hospital at Vanderbilt, put under anesthesia, had a liver biopsy and an MRI that confirmed the initial biliary atresia diagnosis
At 29 days old, on February 17, 2022, Rose underwent a Kasai procedure, a surgery that attempts to fix the issue and allow bile flow negating the need for a liver transplant. Emily and Michael were told they would have to wait three months to see if it was successful. Just short of the three-month mark, Rose’s liver started to decline rapidly causing fluid to accumulate in her belly, increased jaundice and refusal to feed. Emily said, “At this point, it became quite clear she would need a new liver … and need it soon.” On May 26th, Rose was placed on the liver waiting list and Michael underwent testing to see if he could be Rose’s living donor. “When we learned Michael could not be her donor, we were crushed.”
Baby Rose was admitted to the hospital on June 2nd because her electrolyte levels had reached dangerous levels and she was not eating. Emily and Michael were not ready for the news they heard during her liver team’s rounds … they would now need to stay at Vanderbilt indefinitely until a liver match was found. Her health was extremely fragile; Emily and Michael were struggling to stay hopeful.
During these days of waiting, they encountered another liver family whose daughter had received a life-saving liver transplant at Vanderbilt. This family shared helpful information with Emily and Michael — they also encouraged them to reach out to the Children’s Organ Transplant (COTA) to see if they might be able to help with some of the family’s financial fears and stressors related to a liver transplant.
On June 29, 2022, Michael called and talked to COTA’s Family Outreach Specialist. He was able to ask specific questions about their family’s potential transplant-related expenses including co-pays, deductibles and insurance premiums, but also wondered about his unpaid leave from work that would be necessary so he could be at Rose’s hospital bedside. Travelling back and forth from home to Vanderbilt, as well as parking and meals were also concerns.
The Children’s Organ Transplant Association uniquely understands that parents who care for a child 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 are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses. On July 1, 2022, Michael and Emily completed and sent their signed agreement to COTA’s headquarters … the Daniel family officially became part of the COTA Family, and Rose became a COTA Kid.
Exactly one week later on the afternoon of July 8th, Emily and Michael were told Rose had a liver offer from the transplant list. “It was the news we had been waiting for and we felt so many mixed emotions. Our baby’s suffering had an end in sight, but it was not lost on us that a family and their friends were experiencing immense pain and grief over the loss of our donor angel,” Emily said.
The liver transplant team took six-month-old Rose back to the operating room just before midnight on July 8th. They worked all night; the transplant took many hours. Emily and Michael had so many prayers answered when they were able to see their precious baby around 7:30 am on July 9, 2022 – Rose’s official liver transplant date. Once the team told them the transplant had been a success Emily and Michael felt like they could both finally exhale. Rose had not only received a new liver, but also a second chance at life.
Later that month on July 28th, a COTA Fundraising Specialist travelled to Nashville to conduct a training with 25 friends and family members who had volunteered to raise funds for COTA in honor of Rose to assist with transplant-related expenses. After their specialized training, the Daniels’ family and friends were ready to start. They worked diligently to get fundraising events planned, including a Nashville Singer/Songwriter Night that was a tremendous success. Mom Emily is a singer/songwriter and her professional community helped with this COTA fundraising effort in a very big way.
On August 21st, Emily blogged on the COTA-provided website: “We got to come home 2 weeks and 1 day post-transplant! Baby Rose had no complications from the surgery and we are incredibly blessed. We have a big adjustment ahead of us in caring for a special needs baby who needs 19 doses of daily medications at specific times including 2 shots in her leg at 6 am and 6 pm for three months. She must go to clinic and get blood draws every Tuesday and Friday and has home health nursing visits, physical therapy and occupational therapy. We are so grateful to friends, family and people we don’t even know who are making gifts to COTA for Rose that help with transplant-related expenses (and there sure are a lot!).”
On December 7th , this announcement was posted on COTAforRose.com: “The evening of November 15th was a magical night at the historic Franklin Theatre. The COTA for Rose Singer Songwriter Concert and Art Sale was a big success. The COTA team’s Community Coordinator Ginger Ely organized the amazing evening of music and artistry. We are thrilled to announce the evening generated $25,000 for transplant-related expenses.”
On January 9, 2023, Emily blogged on the COTA-provided website: “Today marks six months since Baby Rose received her second chance at life. We are in the hospital with her because she has suffered a major complication that can occur in organ transplant recipients. The past few weeks have been nothing short of really scary and we have been reminded how fragile life is yet again. After many tests and many days of being inpatient, it has been determined she has EBV, which is essentially mono – likely from the donor’s liver. For a transplant patient, EBV can be life threatening – spiraling out of control it can quickly lead to PTLD (cancer). Even though there is no pathology confirmed of PTLD, the doctors want to treat her for it just in case. She has had her first dose of a serious cancer drug. She had challenging reactions. They says the first year post-transplant is the hardest, but I didn’t know it would be this hard. All we can do is trust the medical system, have faith and pray that God will save and spare her life yet again … and never lose hope.”
Rose remained inpatient for several months, and celebrated her First Birthday inpatient at Vanderbilt. There were many other holidays and milestones celebrated inpatient throughout 2023. Rose was in and out of Vanderbilt as the team struggled to keep her healthy and her new liver functioning. Emily and Michael never gave up hope and were always grateful for their friends, family members and the COTA Community who never stopped supporting them in a variety of ways.
A ray of sunshine blessed this family on June 13, 2023, when the Daniel Family of three became the Daniel Family of four with the birth of Rose’s baby brother, Davy. Emily and Michael’s hearts were full, but they continued to face the reality that Rose’s post-transplant journey was still full of challenges.
On August 28, 2023, while Rose was being taken back for yet another surgery at Vanderbilt (this time a three-hour major open abdominal surgery) Emily used the waiting room time to share some powerful reflections:
There are no words to express how much it means to us to know how many people love our baby, pray for her, and care about her and our family. Social media has been a wonderful way to share what is going on and the very unique connections we have made because of it have been absolutely invaluable. We’ve reconnected with old acquaintances and friends and deepened bonds with family and friends who choose to be there with us up close and personal through the not- so-fun times. I’ve connected online with other new moms who had a newborn diagnosed with biliary atresia and felt a level of empathy and understanding that only they can relate to. We’ve also experienced the profound good will, belief, hope and generosity that exists in the human heart of people we know and also people we have never met.
Rose has had so many setbacks, issues, near death experiences, month-long hospitalizations and has required an exorbitant amount of daily medical care. It’s been exhausting on a level that only parents who have medically complex children can understand. If you’ve been following our story for a while, you will remember that on Christmas Day (of all days) we had to drive back from Florida to Nashville and take Rose to the ER because she had blood in her stool, was vomiting, losing weight from poor feeding, had a high fever and was extremely lethargic. We didn’t leave the hospital for almost 3 months. It was heartbreaking, terrifying and we felt helpless. Today, prayers are appreciated for a smooth and uncomplicated recovery, rest and healing for Rose and for peace of mind, strength and encouragement for Michael and me.
Rose’s transplant journey continued to have periodic bumps in the road through the end of 2023 and into 2024. The Daniel family also continued to have a multitude of appointments, tests, lab work and many more costly transplant needs for Rose. Since hearing the diagnosis, Emily and Michael appreciate every moment … every milestone … they have with their beautiful, bright-eyed, high-energy little girl. They also continue to be extremely appreciative of COTA, and the nearly $150,000 that has been raised in honor of Rose.
“The system COTA has built to support transplant families is nothing short of amazing,” Emily said. “We asked a dear friend to be our Community Coordinator and because of COTA’s well designed system and resources, she was able to rally our friends, family members and lots of the community to organize and attend successful COTA fundraising events.”
“We feel strongly that the staff at COTA cares about our family and Rose; it has always been a pleasant experience to communicate and work with them,” Emily said. “COTA has reallocated funds for medications, a multitude of medical bills, copays, family therapy sessions, feeding specialists, physical therapy visits, medical equipment and supplies, and other necessary transplant-related expenses not covered by medical insurance.”
She continued, “The 18 months following Rose’s liver transplant were extremely rough and quite honestly more difficult than the transplant itself. Rose had so many complications that required multiple surgeries, feeding tubes, central lines, daily infusions and much more. To know we never have to worry about her transplant and post-transplant care financially breaking us removes so much stress and allows us to focus on making sure she receives the best care possible.”
However, they know transplant is not a cure. It provides a much better quality of life, but requires costly medications, treatments and monitoring. COTA exists to help families navigate their transplant journeys … for a lifetime.
Today Rose is thriving and able to live her life as normal as possible with routine blood work and liver transplant clinic checkups. She loves listening to music on the record player (Pat Boone is her favorite), playing the harmonica and listening to Mama play guitar and sing. Rose’s favorite animals are pigs and bunny rabbits; she loves to go to the playground and play with her baby dolls. Her parents are extremely grateful for the family who unselfishly chose organ donation during a time of loss and sadness. Thanks to that gift of life, Rose is able to exude joy.
Happy Liver Month, Rose, from your COTA Family!
October is Liver Awareness Month. This month is set aside to recognize 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.
