“Waiting and not knowing if she is going to make it to the next day was the worst. Everyday she woke up she was on borrowed time,” Katy Klein describes her feelings of having to watch her daughter go through waiting for a donor match for a liver transplant. Parents can feel hopeless knowing there’s nothing they can do to take the pain and fear away completely from their child going through something so scary. Fortunately for this family, there was a happy ending.
Emory was only 19 months old when she was diagnosed with portal hypertension with esophageal varices. This is when the portal veins, which transport blood from several organs in the gastrointestinal tract into the liver, has blood that builds up in the nearby blood vessels, including the ones in the esophagus. Her parents understood that there would be a change in how she would live her life but vowed to keep it as normal as possible. Later in life, when she was 12 years old, Emory became very sick while at school, throwing up over her desk with signs of blood in her vomit. When her mother picked her up from school, clearly seeing her daughter not at her best, she asked a question she feared the answer to, “was their blood when you threw up?” Emory answered “yes.”
Emory and her family immediately went to the emergency room where she was transported to the Children’s Hospital of Wisconsin for further testing. The hospital team banded two of the varices (veins in the esophagus) and kept her overnight for observation. When hope was becoming a small light, Emory became worse, with even more blood loss. “When you are sitting in the emergency room, you really hope that it is nothing, but when she began vomiting blood in the hospital, we knew it was serious,” Emory’s mother Katy explained. Her doctors diagnosed her with cavernous transformation of the portal veins (CTPV), which is where your veins become almost like a rubber band ball and make it very difficult for the doctors to get to the center of the problem.
Emory’s medical team was having a hard time stopping the bleeding and finding relief for her, so they decided to take the option of removing her spleen and give her blood transfusions and medication to reduce the flow. Emory’s body undertook about 70 transfusions. Still, Emory was not getting any better. Her surgeon, Dr. Johnny Hong, informed Emory and her family that the best option was for a liver transplant and soon. For a liver to be the right fit, it is based off of the size and blood type of both donor and receiver.
The liver transplant list is managed by the United Network for Organ Sharing (UNOS), the patients on this list are organized by a scoring system called Model for End-Stage Liver Disease or MELD, which gives the sickest patients priority. The scoring system goes from 6 (less ill) to 40 (gravely ill) for patients 12 or older. Emory was given a MELD score of 40, which gave her a mortality rate of 3 months to live. Emory waited 11 months, receiving three false donor matches before her transplant finally came. When the day came for Emory to receive her new liver, there was hope but caution in the air. Her transplant surgery was successful, but unfortunately complications soon arose after. Emory became very sick immediately after her transplant and the doctors discovered that bile was leaking into her abdomen at a rapid rate, which was uncommon. Two months later, she had the help of a renowned surgeon, Dr. Kulwinder S. Dua, who would perform the surgery that would fix the leak by inserting a stent into the opening. The stent took about four weeks for it to properly heal and after the stent was removed and the fluid stopped leaking, Emory finally begun to feel better. Emory could not eat for 18 days due to a condition called Ileus, which happens when there is little to no movement in the intestines. Emory was excited for cheese fries after her medical team gave her the “all clear”.
“From the beginning, I thought I would never be able to go home,” said Emory. She was very thankful and ready to go home and live her life with a new liver. The medical team at Children’s Hospital of Wisconsin had mixed emotions of sadness from having to say goodbye to such a warm and happy child, and happiness in knowing that when a child leaves the hospital with hope of a healthy life, they know that their job is done. Emory and her family will be forever grateful to all who helped with her recovery. The city of Port Washington (where Emory is from) rallied behind the family with emotional and even financial help. “I was blown away with how much support came from the community,” says Katy, Emory’s mom.
Emory is on the road to recovery after being in and out of the hospital for so long and is eager to get her life back as a normal 13 year old girl. The community around her has continued to rally to her side with support. Her family has a Facebook page, Prayers for Emory, where you can view updates on Emory’s health and see all the wonderful events she is at to support others with organ transplants. At the Cream City 5K, Emory helped raise money for others in need of organ transplants and had the support of her whole transplant team by her side. Emory and her family are in the process of starting a foundation, the Emory Strong Foundation, to provide emotional and financial support to families going through the thralls of waiting for an organ transplant. “When the burden is dropped on you, you don’t really know what to do or expect. We want to share our experiences with others,” Tim, Emory’s stepfather, describes why the foundation will be helpful. This foundation will also give assistance for those that are donors.
Through everything that Emory has been through, she has shown nothing but positivity. “Don’t take life for granted”, is what she would tell anyone who is dealing with an illness of any kind. Corey Simon, Sales Manager of Renewal By Andersen of Northeastern Wisconsin, heard of Emory’s story and wanted to give back. For one year, he put aside $1 for every window unit he sold, and was able to raise $2,000, which was presented to Emory as check for her to remodel her new bedroom, and she is eager to turn it into the bedroom of her dreams. Emory has a bright future ahead with Livvie 2.0 (her newly named liver). She is excited to attend 8th grade at Thomas Jefferson Middle School, get back to spending time with friends, and plans to go skydiving once she is fully recovered.
If you would like more information about Emory or how to help her foundation please reach out on their Facebook page, Prayers for Emory. For donations to help with Emory’s medical bills, a GoFundeMe account was created in honor of the family.