(photo by Stacey Houston Photography)

COTA for our STRONG Savanna Wrobel

Our strong Savanna has endured a lot in her short life. She came early on June 24, 2020, at 35 weeks and 3 days. Because she was born premature, she was taken right from our arms and went straight to the Neonatal Intensive Care Unit (NICU) at Northwest Community Hospital. After a couple days, the NICU doctors noticed that her bilirubin levels, which cause jaundice, were not going down. The possibility of biliary atresia and a liver transplant were mentioned but still seemed unlikely at the time. Biliary atresia is a relatively rare (occurring in 1 out of every 10,000 live births), congenital liver disease.  In biliary atresia, the bile ducts are either not formed or formed incorrectly and become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy liver cells rapidly and cause cirrhosis or scarring of the liver. Its cause is currently unknown. The only cure for biliary atresia is liver transplantation.

Savanna spent roughly a week at Northwest Community before she was transferred to Ann & Robert Lurie Children’s Hospital of Chicago for further testing.  While at Lurie they performed many tests including a liver biopsy to determine next steps.  It was here she was diagnosed with biliary atresia and we were told she needed a surgery, called the Kasia procedure, to try and prolong the use of her native liver.  She had her Kasai on July 17, 2020 and was monitored thereafter for about a week.  Finally, on July 25, 2020, after a month in the hospital (and no visitors allowed due to COVID), we were able to bring our beautiful baby girl home!

The doctors at Lurie told us it would be apparent after about three months if the Kasia procedure was a “success”.  Unfortunately, her blood work over those first three months and throughout her first year proved that the surgery was not successful, and that Savanna would need a liver transplant by age two.  The doctors told us as long as Savanna was not experiencing any complications, they wanted her to continue to monitor her at her monthly appointments and let her grow as big as possible prior to listing her for transplant.

On July 6, 2021 Savanna had to be taken to the emergency room because she had been running a fever for roughly 24 hours.  Once at Lurie, they discovered she had an infection due to fluid in her belly.  The fluid, called ascites, is caused by cirrhosis of the liver and portal hypertension.  This type of infection is only treatable through a multiple-day course of intravenous antibiotics at the hospital. This episode tipped the scale, and doctors recommended she be evaluated and listed for transplant.

As many of you know, Savanna was transplanted on August 29, 2021 and was hospitalized for 75 days thereafter.  During that time, she was “asleep” for roughly the first 20 days, endured 6 surgeries/OR take backs and was on dialysis. We were so happy to be able to take her home for Thanksgiving & Christmas of 2021.

Savanna is now a rambunctious 2-year-old and thriving!  She is followed by Liver, Kidney, and Cardiology specialists and she is currently taking five medications (twice daily) and various vitamins, in efforts to keep her strong and healthy post-transplant.  We are so fortunate to live in a city where we have access to some of the best pediatric liver specialists and transplant surgeons in the world. We have great confidence in our team and are beyond thankful for the support of our family and friends. We believe, collectively, we have the power to ensure a positive outcome for our STRONG Savanna!

We have created a Facebook page called “Savanna STRONG” that we will also use to post updates about Savanna and the COTA fundraising campaign. Please feel free to “join” that page.

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.