New Liver = New Life for COTA Kid Conrad Thanks to Uncle John
July 1, 2020 — July 26th is recognized nationwide as National Aunts and Uncles Day, which is a day when family members are encouraged to acknowledge their special uncle/aunt relationships. This July 26th, a Pennsylvania transplant family will definitely be celebrating with Uncle John who recently gave their son (his nephew) a portion of his liver … and the chance to celebrate his second birthday this month as well.
Nicole and Andre Sutanto welcomed their first child, Conrad, into the world in late July 2018. These first-time parents were overjoyed to finally meet their bundle of joy face-to-face. However, when Conrad was about four weeks old Nicole and Andre noticed his jaundice was not going away and his midsection appeared to be bloated. They scheduled a visit with their pediatrician who ordered lab work and scans. Within a very short time of that visit Baby Conrad was diagnosed with Biliary Atresia (BA) — a childhood disease of the liver in which one or more bile ducts are abnormally narrow, blocked or absent. This means that bile does not leave the body as it should which causes further damage to the liver and issues with growth and nutrition. As a birth defect in newborn infants, Biliary Atresia has an incidence of one in 10,000-15,000 live births in the United States.
Nicole and Andre were stunned at the news. In fact Nicole shared, “It was so scary when we heard the diagnosis. I had a really healthy pregnancy and I felt good all the way through it. It was so hard for both of us to believe anything could be wrong with Conrad and it all happened so fast.”
Many infants diagnosed with Biliary Atresia undergo the Kasai procedure, which is typically the first treatment for the disease. While it does not cure the disease, it can slow liver damage and delay the need for a liver transplant. Conrad underwent the Kasai procedure when he was only eight weeks old. Both Nicole and Andre knew Conrad would one day need a life-saving liver transplant. But as they waited for the baby to grow and gain strength, Nicole remembers, “Amid all of this, Conrad was the strongest and happiest baby.”
During the fall months of 2018, the Sutantos knew the transplant was likely drawing near. On November 14th Nicole and Andre were given the news that Conrad officially needed a life-saving liver
transplant. On November 15th (after receiving information from the UPMC Children’s Hospital of Pittsburgh transplant social worker about fundraising for transplant-related expenses) Nicole sent an online inquiry to the Children’s Organ Transplant Association via COTA.org. Later that day Nicole received a telephone call from a COTA staff member to review how COTA helps and to ask more about the transplant journey the Sutantos were facing. Nicole requested more information about COTA, which was immediately sent to her via email. She and Andre signed and returned the COTA Patient Agreement and Conrad officially became part of the COTA family.
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a patient’s lifetime. A COTA representative travelled to Pennsylvania to train the motivated group of COTA for Conrad S volunteers and fundraising activities were quickly organized and orchestrated.
COTA provides each family with a fundraising website at no cost so the volunteer team members and parents can immediately start sharing the story of the family’s transplant journey and the need for fundraising. Nicole regularly used the COTA website blog to share what was happening, and she creatively voiced some of the updates from Baby Conrad. Here are some of the blog highlights of Conrad’s liver transplant and recovery.
November 30, 2018: Hello everyone. Another blood check and not a tear shed. I think I am getting used to this. What I am not getting used to is 30 stitches being cut from my abdomen. There was blood, sweat and tears for that, but we got through it. Hope to see you Thursday night at the COTA fundraiser for cheese and cheeky kisses. Love, Conrad
January 17, 2019: Living Donor Liver Transplant Scheduled for my Half Birthday!
January 22, 2019: Cheers to a new liver coming from my Uncle John on my six month birthday. I am almost six months old, I weigh 15 pounds 5 ounces and I am 2 feet tall. I love eating puffs and anything I can chew. I’m sitting and standing with support. I love sucking my thumb and I love other kids. Love, Conrad
January 23, 2019: Morning snuggles before Mommy goes to substitute teach. I get an Oma day. We will be admitted to the hospital tomorrow. We are ready to get this show on the road. Love, Conrad
January 25, 2019: Our Big Day!
10 a.m. – John is being operated on now. Andre and I just handed a tired and hungry Conrad over to the anesthesiologist.
4 p.m. – A portion of John’s liver is now in Conrad. Just talked to John on the phone. He said his pain now is a three out of 10 and he is mostly just groggy.
7 p.m. – Just told us Conrad did great. They fixed his testicular hernia, drained another six ounces of fluid, replaced his liver and along with John’s sacrificial love, gave our son a second chance at life.
9:30 p.m. – In the Pediatric ICU. Be still my baby boy. I kissed him and told him he is loved and strong. I saw one eye open … I think he winked. Conrad your strength never ceases to amaze me.
January 27, 2019: We saw my brother John and he looks so good! Conrad is doing great. His bilirubin is down to three now and they are talking about removing the breathing tube tomorrow. The hardest part today was when he saw my mom, Oma. She and I were talking and singing to him and he lost it. He was wailing and trying to cry but we could only see it on his face. No sound. Just visually frustrated that I could not hold him.
January 29, 2019: I am ready for the normal floor but there are no beds at the moment so one more night with my ladies in the ICU. I was able to suck down some nonfat formula and Pedialyte … hey … it could be worse. At least I got something. I read more books, listened to music, played peek a boo and learned all about ultrasounds before bedtime. I will be ready for visitors soon. Hugs. Love, Conrad
February 1, 2019: A few less tubes! NG tube came out today. This was in my nose and fed my stomach the extra calories I needed for the operation. I got my catheter out too! We shall see what tomorrow brings. Good Night. Love, Conrad
February 4, 2019: Happy Sunday! I slept really well after our late night dance party. Uber dropped off breakfast for Sutanto Party of 3. Having a little oatmeal and bananas with my bottle. Heading to mass today and praising God for bilirubin numbers. It has never been this low. It is going to be a good day … I can just feel it in my liver. Love, Conrad
On February 5th, Nicole posted: Discharge day!!! THANK YOU. Thank you to our friends and family. Each and every one of you!! Thank you for standing by us, praying, and visiting. Thank you for always being positive and sharing your kind words and encouragement with us throughout this journey. Thank you to all of the nurses, doctors and surgeons who have treated us respectfully and kindly as we ventured into an unknown territory. Last but not least… thank you Uncle John. Without you… Conrad would still be sick and likely still waiting for a new liver.
Once the Sutantos returned to their home, Nicole and Andre were definitely breathing easier. Conrad’s recovery has been nothing short of spectacular. At his many follow-up doctors’ appointments, good news has been plentiful. Conrad’s new liver was a perfect fit and is making a life-changing difference for this little guy. The COTA in honor of Conrad S team of volunteers continued to hold fundraising events to help with ongoing transplant-related expenses.
In July 2019, a one-year birthday update was posted from Conrad: “I can’t believe I’m almost one now. It has been an eventful year to say the least. Now that summer is here, I have been enjoying playing outdoors, going to plays and helping Mommy in the kitchen. I’ve been working on my balance, but it is going to take a few more weeks or months until I can walk, I think. Oh yeah … some of my teeth are coming in so I might keep Mommy and Daddy up at night sometime!”
Without a doubt, neither Andre or Nicole will mind one bit getting up at night comforting their healthy toddler when cutting teeth, or taking care of ‘ouchies’ that accompany first steps or listening to Conrad’s first spoken words. Just being able to parent through their ‘new normal’ is a gift to this COTA family. And they will be forever grateful for the selfless, life-saving gift Uncle John gave to Conrad.
According to Nicole and Andre, “The Children’s Organ Transplant Association (COTA) has provided hope for us now and will continue to do so into the future, which is very reassuring. We are grateful to COTA for guiding and supporting our team of volunteers with fundraising assistance. COTA gave our friends and family members a way to help during a challenging time. COTA allowed us to focus on Conrad and not the mounting bills — it truly gives us peace of mind knowing these funds will be available … for a lifetime.”
Happy National Aunts and Uncles Day, Conrad and Uncle John, from your COTA Family!
