Crue’s Liver Journey – The Beginning
Our little man Crue was born on July 13, 2024. Sheli had a healthy, happy and uncomplicated pregnancy. After 8 hours of natural labor, it was determined that he would have to be birthed by emergency c-section because he would not come out on his own. After a slow start and a little help from extra oxygen, Crue was released from ICU after a 24-hour period. We had a perfectly fine little baby boy! Sheli became a first-time mother. Brandon finally got his first son. Rayne and Miley welcomed their baby bother with the most joyful and loving arms to be his big sisters.
Due to an extended hospital stay the pediatrician got more observation time with Crue and discovered his direct bilirubin was higher than normal. Upon discharge the pediatrician conferred with Children’s Hospital in New Orleans and made the call that they wanted him to be flown in from Thibodaux Regional Hospital to CHNO for further testing and observation.
At CHNO they monitored his direct bilirubin level as it rose. Their concern was that he could possibly have Biliary Atresia. Biliary Artesia is a rare liver disease that affects 1 in 20,000 newborns in the US. Biliary atresia is when the bile duct connecting the liver to the small intestine has no flow in order to release bile from the liver. The bile ducts progressively fibrose and scar over causing bile to back up in the liver and leads to progressive liver damage, cirrhosis, and ultimately certain liver failure. Biliary atresia has no known cause. Babies born with biliary atresia have a 100% mortality rate if interventions are not implemented immediately. There is a surgery to try and fix the issue called the Kasai Procedure, in which they remove the bile duct and connect the small intestine directly to the liver. Even with the Kasai the doctors explained to us there is only a 33% success rate of the surgery and ultimately most kids end up needing need a liver transplant at some point in their lives.
While at CHNO they performed two liver ultrasounds that were inconclusive. Because they could not diagnose for certain that it was biliary atresia, Crue was discharged. After a few follow up appointments and another inconclusive ultrasound it was still unconfirmed if it was biliary atresia. Crue was approaching six weeks old and the statistics say that the success rate of a Kasai procedure drastically reduce if not caught by eight weeks old. His doctor determined that they needed to perform a cholangiogram to inject dye into the liver bile duct and monitor the flow of the dye via x-ray. If they determine no flow and diagnose biliary atresia, they perform the Kasai right then and there. Two days later, August 23, 2024, we brought Crue in for the cholangiogram at CHNO. After a few hours, the surgeon came out to tell us that she confirmed that it was biliary atresia and the Kasai procedure was underway.
After a three-month wait his bloodwork numbers continued to climb and never started a downward trend that would indicate success. At that point, his doctor deemed the Kasai a failure and began to discuss a liver transplant with us. His doctor referred Crue to Texas Children’s Hospital in Houston, TX, as being the top transplant center near home, a 4.5 hour drive (6 hours when traveling with a baby).
After being referred to Texas Children’s for liver evaluation we arrived there on December 9, 2024, for a three-day marathon of appointments and testing. On January 2, 2025, we received the news that Crue was officially listed for a liver transplant with a PELD score of 13. In the meantime, there have been numerous hospital stays for Cholangitis (inflammation of the bile duct system caused by a bacterial infection) and Ascites (fluid in the belly). On January 6, 2025, during an MRI, Crue’s glucose level dropped to a dangerous level and the liver team determined that they wanted to put him on an NG feeding tube. The tube feeding would only be during his nighttime sleep period to keep him under feed so that his blood sugar level would not drop during his long periods of sleep. On January 27, 2025, during a routine blood work check Crue’s glucose level was low again and the liver team decided to put him on a 24/7 continuous tube feed to have a constant regulation of his blood sugar level.
The liver team petitioned for additional exception points to Crue’s PELD score and on January 23, 2025, the exception points were approved and his PELD score increased to 31 (40 being the highest score). So until transplant we live life on pins and needles just waiting for the phone call at any moment to get to Houston immediately for transplant. We pray in the meantime that he continues to feed well to continue his weight gain and encounters as minimum of complications as possible. We try our best to keep a positive attitude. The level of prayers, comfort and support we have received has been a blessing.
As the doctors have told us, a liver transplant is not a cure, it’s a lifelong treatment. Crue will have to take medication the entire remainder of his life and will be immunosuppressed due to the medication to keep the immune system from attacking his new liver. We are thankful for the COTA organization and their dedication to share their decades of experience with families of children who need transplants. We obviously did not plan on any of this happening and truly believed that we would have a 100% healthy newborn baby. The financial toll this long-term medical crisis has and will continue to be overwhelming and something that will continue with Crue even as an adult.
Please consider donating to COTA in honor of Crue to assist with his lifetime of transplant-related expenses. We welcome any generosity from our community and we thank you with our whole heart for your kindness.
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 their 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.
If AB+ always have a peice of mine
Sending prayers to u all
I’m so sorry this has happened. Crue is a very beautiful baby . My thoughts and prayers are with you all. Please keep us all posted on his journey.
Prayers for your little man!! We have had several donors in my family and I am an organ donor myself. I will continue to pray for Crue and his mom and dad. Best wishes 💙💙
Praying Healing Mercies over Crue 🙏
Crue and the whole family are in my thoughts and prayers 🙏❤️. God bless you all ❤️❤️
I am praying for your little warrior! My husband was a double lung transplant recipient. He was transplanted 7/4/19.
It gave us three more loving years together. He sadly was medically neglected which caused his body to attack his transplanted lungs.
He was on the list for 3 years before getting the best match available.
But once he was listed, we got a call with in two weeks, then again 6 months later.
I am confident that your baby will get his match as well! God bless!
Praying for Crue and the entire family.
Praying for that precious boy and his family.
Prayers are with you all and also to the family that makes the decision to donate when time comes. 🙏🏻🙏🏻🙏🏻
Come on Crue and show them what bayou babies are made of!! You got this precious little one!!
Unending prayers and love from west central Louisiana. I’m praying specifically for God to move on y’all’s behalf and His will be done. ❤️
I pray that he will get a transplant soon and all will be a success! Your in my thoughts and prayers
You’re in my prayers little man. I think more people should be an organ donor. I’m one and just knowing I could help save a life is a blessing. I pray you get better.
Is there away to be tested as a potential liver donor, I’m living in Canada, I love the show, anything I could do to help.
Thank you! Right now, we are going the route of deceased donor as Texas Children’s does not do living donors.
Praying for him and the family
We’ll pray right along with you for Crue’s future as well for your entire family to be blessed! He’s a beautiful little guy.
Sending love and prayers from a sibling of a sister who needed a lung transplant. You’ll be forever in my thoughts.
I am A+ if I can help please let me know. Praying for yall🙏🏻🙏🏻
Thank you! Right now, we are going the route of deceased donor as Texas Children’s does not do living donors.
Many prayers for this sweet little baby boy we are big fans of swamp people and of course the Landry family are our favorites! We traveled all the way to Louisiana to just get a chance to meet Jacob and Mr Troy and that made our time there worth wild I will never forget it ! Since we have been back in Kentucky my husband went out on the Ohio river one day to Fish and had a bad accident and should have lost his life but with Gods help he is getting stronger everyday I broke me ankle on his wheelchair ramp and have been through two surgeries and 3 mouths in a boot cast but I guess what I’m trying to get through is God is always great he does amazing things so from here in Kentucky until we can come back down that way we will be praying for you all and that sweet baby boy God bless you all
So can Crue have a living donor? Can he actually receive a portion of an adult donor’s liver? What are the requirements to be a donor of a portion of a liver?
You are correct. Right now, we are going the route of deceased donor as Texas Children’s does not do living donors.
Can’t a family member donate part of the liver as the liver can be divided with no harm to the person who donates??Just a thought!!
You are correct. But right now, we are going the route of deceased donor as Texas Children’s does not do living donors.
Sending the Hotard family much love and many prayers for your beautiful baby boy!!! God bless you all!
God is in control
I am sharing this so if anyone I know may be an organ donor
Prayers to y’all and God Bless
I have watched your dad for so long
Asking GOD to touch & heal baby Crue in Jesus name… Amen
Also praying for the parents & sisters.🙏🏻
I am so sorry. Keep the faith and keep praying. God can do anything. I will pass this around and we’ll start a prayer group.
I will be passing this along to everyone. So everybody can start praying.
My son was born with neo-natal hepatitis and had a liver transplant at 7 months old in Chicago, Illinois. We were the 13th ones in the country to be a part of a trial with the living related donor program there. My husband donated 25% of his liver to our son, the surgery was successful! My heartfelt prayers are with your precious son and family during this journey!
I’ve never heard of this condition how devastating for you all and that beautiful little boy.
I send you lots of prayers 🙏 and love ❤️.
I will donate on payday.
I will pray for y’all everyday. My heart aches for each child and family that has to experience this. My daughter was born with this disease and has had her liver transplant. If any of you ever need a set of ears, a little encouragement, or a shoulder to help hold you worried I’m ALWAYS here. Love and prayers from my family to yours!
I pray that Crue gets a new liver and lives a good long life hunting alligators in Louisiana. Have you thought about getting him listed at Vanderbilt’s Children’s Hospital in Nashville, Tn. ? I know for a fact that you can be listed at other transplant centers. I had my liver transplant done at Vanderbilt’s Transplant Center and my liver has done fine.
GOD BLESS CRUE AND HIS FAMILY! KEEPING YOU IN MY PRAYERS!! HE’S A CUTIE !!
You are correct. But for right now we are comfortable with Texas Children’s. It’s the closest to home and #1 in volume of pediatric liver transplants per year. They have been great. He received a donor call just this week but ended up being a dry run. So he should be getting more donor calls here soon.
Have they checked family members for a liver lobe transplant? Is it possible to donate a piece of a liver to a baby?
Do you guys have a match drive going or do those even work?
I am so incredibly sorry you are going through this, your family is in my prayers!
Right now, we are going the route of deceased donor as Texas Children’s does not do living donors.
My prayers goes out to u and family and little man
Our thoughts and prayers continue to be with you and your family. God is an awesome God.
Our thoughts and prayers continue to be with you and your family. God is an awesome God. Praying for a transplant liver to come soon.
Please check into live donor transplant. Look up Sarina M Jones and her Dad Robert G Jones. He donated the lobe of his liver to his daughter.
Prayers for Baby Crue and family! May God Bless you more soon!
God is in control. Jeremiah 29:11
Prayers for yall and that precious baby
Yes a liver transplant is a lifelong treatment. I am a 59 yr old lady that just had a liver transplant in Sept 2024 and it made a big change in my life for the best. I will continue to keep you all in my prayers. Prayers do awesome wonder. Keep your faith strong .
Would like to donate for Crue and other children that need liver transplant.
I want to help Crue and other kids that need a transplant like Crue needs…
We have always felt a connection with your family as my father was from Sorrento and instilled so many of the values in his children that Troy did y’all.
Our family will be praying for for this beautiful little one in the Mighty Name of Jesus 🙌 – He already has His hand on him♥️
I’m praying🙏🤲 for Crue and his family. I pray🙏 a perfect match will come soon for this precious ❤️ little man. Our God works Miracles everyday and y’all will be in my prayers for exactly that . I know how the finical burden can be overwhelming as I have been there . May a Miracle come soon for for Crue … with love and prayers . Robin Williams
Power of prayer will bring him a new liver. It will happen on God’s time. I just had a liver transplant for the end of life. Never smoked, drank or did any kind of drugs. Was on the list for 3 1/2 yrs. 12/29/24 I got the call. It will happen.
Bless the entire family. And many prayers.
I will be adding Crue’s name to our church prayer list. We have some pretty great prayer warrior’s. We are long time fans of the show and love you all! Many prayers and hugs.
One of my good friends twin grandbaby was diagnosed with this an has gone thru the same process. They recently went to Houston also they live in Oklahoma but are from North Louisiana 30 miles north of Shreveport. Praying daily for Rebecca an will for Crue may God bless both these babies an their families
Keith had a iiver transplant at 49 in 2006. 18 years later he is functioning well. Skin and memory issues due to medication are present, but the Lord has been good to us. He has met 6 grandchildren! May the Lord guide you each step of the way. Looking to Jesus, Aninha and Keith Barrett
Prayers and hugs for all of ya’ll
Many prayers
Hi,
Would a partial liver transplant from a living donor work or at least give Crue more time to gain strength until a full liver is found? I know that the liver will generate/regenerate to 100%. Is this a consideration?
Right now, we are going the route of deceased donor as Texas Children’s does not do living donors.
Are his parents a match for him? Or does he need a child’s liver and a full one? My friend’s mom donated half her liver to her son who had crohns disease.
Right now, we are going the route of deceased donor as Texas Children’s does not do living donors.
My prayers are with everyone my granddaughter was 9 weeks old when they discovered she has biliary atresia they did the surgery she is now 3 years old and thriving in life her levels are stable we have an amazing liver team at CHOA .
My prayers are with your family. And especially for Crue. I pray Gods has him and you all in his loving arms. I pray for a liver becoming available soon and for a successful transplant and complete healing. I pray Gods strength and comfort during this difficult time. Please keep the faith and know God is with you all.
Please keep me updated on Crue’s health, my prayers are with him and his family.
Prayers for your precious baby boy and his family.
Praying for a speedy call for his transplant and for the family whose loss will make it possible. My daughter and I waited 2 years in a transplant apartment, 5 calls and
admissions only to find the new lungs were,”not for Lexi”
but the 6th one was the miracle one. That was 8 years ago on March 10th.
Thank you Jesus and you’re surgeons and staff and for the donor family who gave her the of life.
Poor lil baby! Prayers for healing
Lots of prayers for your baby boy!! God is by his side n yalls too!!
To the Landry family…..
My thoughts and prayers are with y’all, including that precious baby boy. Treasure every single second with him-for I lost my grand daughter to SIDS a little over a year ago. Sending love & hugs 🤗
Awe…. Prayers for your precious baby boy. 🙏🙏🙏💦💦💦. May the Lord hear our prayers for little Crue. And may He give you all the strength needed to get thru this. Sending virtual hugs to you all.
IN JESUS NAME…
I am A+, healthy, non-dr8nker, non-smoker, live in Texas just hours from the hospital for the transplant. If there’s a way to be tested on his behalf, I’d be more than willing to test & to donate if a match occurs.
Prayers are with them. Can they not take a piece of his liver the good part and grow him one? My son lived 23 years and was a study child with this liver disorder
Prayers are with you my son born also with this liver disorder and lived till he was 23. They can possibly take small piece of matching liver and grow baby one. My son was on list also. He was a study child for this liver disorder please tell me Landry this and hopefully it will help. They put tube between two parts to keep his poisons drained