Val Henry Humanitarian Spirit Award

On March 29th the Hosmer and Suess families welcomed a precious baby girl into their world, Sophia Nicole appeared perfect in every way. When she went home from the hospital with her parents, they were told she had a little jaundice and a biliblanket would help with that. Most babies have jaundice and it was nothing to worry about.

At her first pediatrician visit her very thorough pediatrician did a direct bilirubin test and was concerned that it was still high, so Sophia was referred to a GI specialist. By the time Sophia was two weeks old she had been diagnosed with a rare liver disease that affects approximately 1 in 20,000 babies born in the USA, Biliary Atresia. This disease is the number one cause of liver failure in babies and children. Biliary Atresia is not genetic, or caused by anything before or during pregnancy. It is completely random, all we know is that these babies are born with a very malformed gall bladder or missing gall bladder and Biliary ducts that are malformed or non existent.

Sophia’s first surgery was at 3 weeks old to remove the malformed gall bladder and bile ducts and connect her liver directly to her intestines using a piece of her intestines. It was a six hour surgery on a 25 day old baby.

The surgery was successful and everyone was hopeful that Sophia would be one of the lucky ones that would survive without a liver transplant.

She came home and the journey to weight gain began, your body can not breakdown nutrition without bile from your liver. Within The next few weeks Sophia was not putting on weight and we were admitted into the hospital once again. Unfortunately the disease had progressed to affect the bile ducts inside Sophia’s liver, she would need a liver transplant. Livers for babies are not readily available especially for a little baby.

The transplant list is long and it looked as if Sophia needed the new liver soon. Fortunately the pediatric transplant team in Columbia University’s New York Presbyterian Hospital has been doing partial liver transplant from a live donor. The liver is an amazing organ that can regenerate itself and the recipients liver grows along with her and the donors grows back to its original size.

Time was of the essence and finding a living donor that was a match was urgent. Well Tori Suess immediately said she wanted to be tested. First step was a simple blood test to see if they had matching blood types and they did.

Off to New York the family went to do further testing. Sophia’s dad and her aunt Tori were both the same blood type as Sophia so they began further tests to pick the best match. Her father’s liver was too big, but her aunt Tori would be a perfect fit. Tori underwent testing for 5 days, 25 tubes of blood, multiple xrays, ultra sounds and MRI’s and of course multiple visits with Psych to make sure she understood what she was doing.

  • She could die in surgery -Her liver might go into failure after the surgery
  • She would be in bed rest for 3days-2 weeks depending on how the organ retrieval went.
  • if all went well she would be stuck in New York for a minimum 2 months.
  • she could not have any alcoholic drink for 6months to a year depending on how her liver healed

Tori never wavered and was 100% sure that her gift would give Sophia a chance at a new life. On August 16th Tori Suess walked (yes walked)into the Operating Room , where as she looked around and climbed onto the operating table she was asked one last time if she was sure she wanted to do this, if she changed her mind they wouldn’t tell anyone. They would say something went wrong and they couldn’t use her. Tori was fearless and said yes I am willing. Tori was in Surgery for almost 7 hours as they carefully removed most of the left lobe of her liver along with the left portal vein and left hepatic artery.

Once the left lobe was removed it was walked over to the Children’s Hospital across the street and Sophia’s surgery started. She was in surgery for 10 hours and her abdomen was left open for five days until the swelling went down . When Tori was finally off heavy meds, 48 hours post op she was taken over by her surgeon to see Sophia. It was the most touching moment.

Tori was discharged from the hospital 3 days later and allowed to resume regular activities slowly, finally allowed to return back to Broward 2 months post surgery. Tori’s liver is growing back and all her liver functions are in range.

Sophia came home from the hospital 8 days later and finally cleared to return home after 3 months of post surgery care with her medical team in NYP. She will continue treatment with her team in Miami and NYP together maneuvering the delicate part of balancing meds to keep the liver happy without rejection.

Because of Tori’s selfless act our family is finally able to look forward to Sophia growing up and doing regular kid stuff. Since her donor was a family member and she was so small the goal is that Sophia will be off all anti-rejection meds by the time she is ready to start school.

“Medicine has come a long way but we definitely need more awareness on organ donation, too many die waiting on organs.”

“We were blessed with a daughter that has a heart of gold and is the most giving person I have ever met.” – Betty Suess

One Year Later… 01/12/20

Tori’s one year check up in NY went great! Her liver has grown back to 94% of its original volume and all her labs were perfect.

Sophie is a year and 4 months post transplant, in the 85 percentile in the height and weight growth charts. She has had a pretty good first year, some mild rejection that we are treating but doctors say she is doing great and it’s normal when their immune system first wakes up! She is smart, funny and fast! God and the power of prayer is amazing