Our sweet Rose Lee Daniel was born on January 19th, 2022. She arrived just one day after her due date. Emily had a healthy, happy and uncomplicated pregnancy and then an unmedicated and natural water birth in a tub at Vanderbilt Birth Center in Nashville, TN. It was an extraordinary, beautiful and remarkably peaceful experience.
We took Baby Rose home that very day and got to enjoy a couple of fabulous and tiring weeks together as we learned how to be new parents. We will forever treasure those first two weeks when life felt perfect.
At her 2-week checkup, she had lost weight, was still slightly jaundiced, and her pediatrician noticed some paler than normal stools. He did some blood lab work that day and called us early the next morning saying that her direct bilirubin level was too high and to prepare for a long day at Vanderbilt Children’s Hospital. We took her in that morning for an urgent ultrasound. We will never forget waiting in the main atrium for his call after the ultrasound. And we’ll never forget the news. It wasn’t a simple problem. Her gallbladder and bile ducts were not visible and he was concerned about a rare liver disease called biliary atresia that affects 1 in 20,000 newborns. Biliary atresia has no known cause, which initially was a very frustrating piece to all of this. The bile ducts progressively fibrose and scar over causing bile to back up in the liver and leads to progressive liver damage, cirrhosis and ultimately certain liver failure. Only a few decades ago babies died from this diagnosis as transplants were not a medical option yet. There is now a surgery to try and fix the issue called the Kasai Procedure, but ultimately most people need a liver transplant at some point in their lives. They would need to do many more tests before determining the diagnosis officially. We were devastated, heartbroken, terrified and our brand new baby was only 2 weeks old.
Our pediatrician got us an appointment that same day with the hepatologist and Rose’s guardian angel, Dr. Anita Pai. She shared with us her first of many inspirational talks that day. She broke the news that this is likely biliary atresia, but that one day this will all be under control and Rose’s liver will be the least interesting thing about her. She encouraged us to not let any of this steal our joy, to take care of ourselves and each other and to enjoy our new baby.
That day triggered a whirlwind of events. At only 2 weeks old she was admitted to Monroe Carell Jr. Children’s Hospital (Vanderbilt Children’s), put under anesthesia, had a liver biopsy and MRI that all but proved biliary atresia and we spent our first night in the hospital. In the last 5 1/2 months since she’s been born, we have spent almost 3 months (and counting) living in and out of the hospital. She has gone under anesthesia 9 times, admitted to the hospital 6 times, taken an unbelievable amount of medications, had dozens of ultrasounds and too many X-rays to count, a CT scan, 3 liver biopsies, a lumbar puncture, many IVs, a Broviac line, 2 PICC lines, 8 blood transfusions, an NG tube, vial after vial after vial of blood taken, and has had cholangitis, a UTI, peritonitis, paraflu, severe hypoglycemia and sepsis. At 29 days old, on February 17th, she had the aforementioned Kasai procedure. After that, we waited 3 months to determine if the bile was going to flow enough to prevent a liver transplant or if the surgery had failed.
Right around the 3-month post Kasai surgery mark, Baby Rose started experiencing a rapid decline in liver function which then started causing noticeable changes. She developed ascites (fluid in her belly), worsening jaundice, and stopped feeding. She would need a liver transplant – and soon. The team did a full transplant evaluation and on May 26th put her on the list with a PELD score of 24. Michael immediately started the living donor workup. Emily wanted to, but she was not the right blood type. After a 3-week workup, it was decided that the section of Michael’s liver they needed wasn’t a perfect match due to her small size. They had warned us that this might be the case due to his height. That news was crushing. We had a friend who was gracious and selfless enough to begin the workup after that. We will forever be grateful for her willingness. Many others also offered.
They admitted Baby Rose to the hospital again on June 2nd due to some dangerous electrolyte levels and poor feeding. They decided that we would need to stay there indefinitely until transplant because her health was so fragile. Her ascites worsened and she needed surgery to remove some of the fluid. She developed sepsis (a very serious and potentially fatal blood infection) and on July 4th she vomited blood from a bleeding esophageal varices (a GI bleed). They moved her to the ICU.
It was so terribly difficult to see our baby girl decline and be so close to death’s door while waiting for that new liver. Her PELD score increased to 40 (the highest score) and time was truly running out. On the afternoon of July 8th, we got the word that she had a liver offer from the transplant list! It was the news we had been waiting for and we felt so many mixed emotions. Her suffering had an end in sight! It was not lost on us that a family and their friends were experiencing pain and grief over the loss of our angel donor. We will forever be grateful and hope to let that family know that in the future.
The surgery team took her back at 11:45pm on July 8th, worked all night long for hours and we got to see her again around 7:30am the morning of July 9th, 2022. The liver transplant was successful and the phenomenal surgeons were very happy with how everything went.
Baby Rose now begins her recovery journey and life as an organ transplant recipient. We have been told to stay cautiously optimistic as the road is bumpy and still must be taken one day at a time. Her color is already starting to “pink up” and we are marveling at the MIRACLE all of this truly is!
We have done our best to keep a positive spirit about us. It is really hard sometimes. When times are extra difficult, when we are beyond tired, or things are going downhill, we often joke about how “we are so blessed”. But that joke is funny to us because we truly believe it despite it sounding ridiculous to say under these circumstances. The level of support has been overwhelming to say the least. We thank God daily for our Baby Rose, and are all ready to see her grow, thrive and blossom.
We are thankful for the COTA organization and their dedication to share their decades of experience with families of children who need transplants. We obviously did not plan on any of this happening and truly believed that we would have a 100% healthy newborn baby. The financial toll this long-term medical crisis has and will continue to take is overwhelming. Please considering donating to COTA for Rose to assist with a lifetime of transplant-related expenses. We welcome any generosity from our community.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.