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Story of Fayth

(A note from Hannah. Before diving into this beautiful baby girl's story, I want to note that there is some medical terminology that will come up. At the very bottom I broke down these terms to help the reader who may not be familiar with these terms. The terms will be underlined in her story. Now onto Fayth.)

"Hello my name is Ashley Patrick and I’m Fayth’s mother. Fayth was born on 11/11/2020 I thought what a beautiful birthday! Our sweet Veterans Day baby! We were over the moon! She was born nice and healthy, so we thought! She had a check and she was right on track with her growth and her labs checked out!

December 26th I noticed her eyes were yellow which I know now means jaundiced and I immediately took her info to have blood drawn to see what was going on, we didn’t hear from the clinic for 4 days! In my mind I wanted to believe I didn’t hear from them because she was okay, my heart knew that, that wasn’t the case. Every single day her eyes were darker yellow. I started reading things on google and my heart sank I knew it was her liver but I kept telling myself she was fine. December 30th I get a call from my clinic that Fayth needed to have her labs drawn immediately, my heart sank again. Her labs were even worse this time. We were told we had to go to the ER and we waited in that room for what seemed like forever, it was there the doctor told us Fayth was having liver issues, but they couldn’t treat us here in town there’s no specialist for this! I was in tears we had just moved to this small town in North Dakota called Dickinson there’s only one hospital here. I felt guilty for moving from Arizona where there’s multiple hospitals and specialist. We stayed the night in the ER and was airlifted to the Mayo Clinic in Minnesota. When we arrived the hall for the room we were assigned had doctors and nurses on standby and I was just thinking my gosh how bad is it? I hate that I even asked. It was bad, my daughter was rushed to the OR to get a PICC line inserted and to get a biopsy of her liver I was so confused and I asked what felt like a thousand questions. I dreaded the answer, but we had a diagnosis, Biliary Atresia I had never heard of this! I was asking myself what did I do wrong for her to get this?

She had Pediatric Liver Disease, which almost always has to have a liver transplant. I was getting information fast and having to learn what I could to keep my baby alive, it was the scariest time of my life or so I thought! The surgeon performed a Kasai on Fayth to try to help her keep her native liver for as long as possible before needing a transplant. We were in that hospital for 8 days and then sent home with a baby who had surgery and a liver disease. I felt devastated but I was determined to keep her healthy and alive. We were home for two weeks and had to be rushed back to the hospital because Fayth stomach swelled so big we couldn’t even put her coat on! We found out that she was septic and I almost lost my baby! Devastated was the only word I could think. I was also told her Kasai failed and she needed to be on the transplant list. I thought If that’s what’s going to save my baby and keep her from being in the hospital I’ll do it. We were in the hospital two more times before she was placed on the list! Fayth was 6 months old when we received that miracle phone call I thought God thank you! Thank you for saving her! Her transplant day was May 29th, 2021 and she was in the OR for 8 hours. I was scared but happy that my baby was finally going to get to LIVE without all the sickness and pain! She gets out and immediately we see swelling going down and immediate blood flow to her liver, yes! Two days later she had white eyes, no one knew how awesome it felt to see her look healthy.

I dropped to my knees and prayed and thanked God in her room! Her nurse came and prayed with me, I was just so grateful for God and this blessing. We finally got to go home after 2 months of being in the hospital and we got another wonderful 8 months with her with no hospital stays. Fayth and our family caught COVID, but what I noticed is as we got better she still seemed sick. I mentioned it to her team and they told us to get her admitted to see what could be done. I wasn’t happy to be back in that place with those memories but I knew she needed to be there! One doctor told me she was going to be seen by oncology and I was terrified. I thought, "What? Cancer?" The doctor reassured me that it was just routine and that she more than likely would be fine. The oncologist came and said she felt a swollen lymph node on her groin, but she chalked it up to her having a diaper rash. I wish I would have asked more questions, I wish she would have checked more places on her body, but at that time we didn’t know. We were sent home after being there for a week, she seemed to really feel better! We celebrated her first birthday, Christmas, and New Year; it was so wonderful!

February the nightmare began. Fayth got sick again but this time it seemed she couldn’t get better no matter what we tried. We were in and out of the ER almost the whole month, but I wanted her to feel better. She started losing weight rapidly so I talked to her team and they had her placed on Pediasure, which did nothing, she was still losing weight. March I called, "the beginning of the end". She was so skinny and getting fevers daily, so we flew out to Minnesota, not knowing she’d never walk out of that hospital again. Our worst nightmare had come to pass, my sweet little girl ended up with Post-transplant Lymphoproliferative Disorder (PTLD) a common cancer that happens with transplant. Her donor had Epstein-Barr virus (EBV) and that’s what triggers PTLD. My baby had cancer, the signs were there but we didn’t know. She got one round of chemo but her little body just couldn’t fight. On April 6th, 2022 my baby passed away. It’s been so terribly painful and hard especially because I was pregnant at the time. My children, husband and I have been doing our best to heal but there’s always this empty space in our hearts. We love you Fayth! Thank you for reading her story."

Written by her mother Ashley Patrick

Some medical terms broken down:

Peripherally inserted central catheter- a type of long catheter that is inserted through a peripheral vein, often in the arm, into a larger vein in the body, used when intravenous treatment is required over a long period.

Biliary atresia is a condition in infants in which the bile ducts outside and inside the liver are scarred and blocked. Bile can't flow into the intestine, so bile builds up in the liver and damages it. The damage leads to scarring, loss of liver tissue and function, and cirrhosis.

Sepsis is the body's extreme response to an infection. It is a life-threatening medical emergency. Sepsis happens when an infection you already have triggers a chain reaction throughout your body.

The Kasai procedure involves removing the blocked bile ducts and gallbladder and replacing them with a segment of your child's own small intestine. This segment of intestine is sewn to the liver and functions as a new extrahepatic bile duct system.

The post-transplant lymphoproliferative disorders (PTLD) are a group of potentially life-threatening conditions that affect patients who have had an organ or bone marrow transplant. PTLD occurs because the immune system of these patients is weakened to allow them to accept the newly transplanted organ or bone marrow.

Epstein-Barr virus (EBV), also known as human herpesvirus 4, is a member of the herpes virus family. It is one of the most common human viruses. EBV is found all over the world. Most people get infected with EBV at some point in their lives. EBV spreads most commonly through bodily fluids, primarily saliva.

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