Landon David Rost is a very loving and happy little boy. His journey has been filled with many ups and downs. He has already endured more during his short life, than most of us will in our entire lifetime. Landon is a true miracle and blessing. We have only seen in person a few family members and friends, due to the risk of covid exposures and other germs. We need to stay healthy and ready, for when he gets the call for his transplant.

Landon was born premature in April 2020 at 25 weeks, with his twin sister Lexi. Being micro preemies, they only weighed 1lb 8.3oz and 1lb 7.3oz. They spent the first 18 days in the Saint Cloud NICU before his sister unexpectedly developed NEC (necrotizing enterocolitis) and suddenly passed away. Landon was transferred to Masonic Children’s Hospital in Minneapolisthe very next day. We knew the doctors were concerned about Landon as they told days prior, he needed to be transferred to a different medical facility. He had developed a blood infection from the belly lines and had a possible abscess that would need to surgically drained by his spleen.

Once the infection was under control, it was time to fix his Heart PDA with his first surgery. After the surgery, the surgeon told us his concern about Landon possibly having developed NEC as well. May 28, 2020, they told us they would be doing exploratory surgery to look for NEC and do Landon’s first liver biopsy. They found NEC and had to remove two sections of his intestines; one spot that was about to burst and one spot that was dead. They removed a total of 11cm of his 75 cm of intestines. He ended up with four ostomies and we were told he would have to grow bigger before they could reconnect his intestines putting them back inside his body.  

After Landon’s first liver biopsy, his GI specialist told us about the paucity of interlobular bile ducts and cholestasis (fewer bile ducts inside of his liver). At that time, she suspected that his high bilirubin was due to being born premature and being on the TPN nutrition fluids. That once he gets off TPN his liver should improve.

On July 22, 2020, Landon had his second liver biopsy. There were concerns with his liver and the biopsies had shown change since the first one. With the need to figure out if his bile ducts are plugged or what was causing his bilirubin to keep increasing, we were told about a test called aHDIA scan, where a radioactive tracer was injected it into the vein, an imaging procedure to diagnose problems of the liver.

July 30, 2020, Landon had the HDIA scan to determine the flow rate in the bile ducts and gallbladder. There was a 1% chance the test would be conclusive and tell us what we needed to know. No one on his team expected it to work and it was a last-ditch effort to avoid a more invasive surgery to see what’s going on. The contrast was able to go through an IV to his liver and gallbladder and move into his intestines. That meant the liver damage was not Biliary Artesia and most likely was from being on TPN and lipids for so long. They had seen some adverse reactions in other patients from being on TPN and lipids long term, but nothing like Landon was experiencing leaving his care team quite puzzled.

September 9, 2020  Typically, when the refeed stool in ostomies, the bilirubin would go down, but Landon’s kept going up, leaving his team very puzzled and requesting a second HIDA scan. They thought they ruled out Biliary Artesia from the last scan, but at this point they don’t know what else it could be. Biliary atresia is a disease of the bile ducts that affects infants. Bile is the digestive liquid that the liver makes and goes through the bile ducts into the small intestine, where it helps digest fats. In biliary atresia, the bile ducts become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy the liver and cause scarring of the liver. Landon’s doctors wanted to retest before his big takedown surgery to reconnect his intestines, so they could prepare— if need be, to change the surgery to a Kasai.Kasai surgery is where they take out the bile ducts from the bottom of the liver to the intestines. They attached the small intestine directly to the liver, so the liver can drain properly. We were told if the Kasai was done there was a 33% chance it would help, 33% chance it would work for a little while then need a liver transplant and 33% chance it would fail and he would need a transplant ASAP. The surgeon just kept telling us because Landon was so small and it would be risky. The contrast did not even uptake, so the second HIDA test was inclusive.

Sep 10, 2020 Landon had his take down surgery to reconnect his intestines. They also did a cholangiogram, which showed movement through his liver. A third liver biopsy was done. It was a very long 13-hour surgery, where three drains were put in: a JP drain, incision drain, and a gallbladder drain. The gallbladder drain was put in placed in hopes to flush it and push some of the bile through. They also used the drain to do more contrast studies in the future.

Sep 16, 2020 We got the biopsy results and it was unchanged from the last biopsy. It did show more fiber scarring, but the liver was still at a point where it could repair itself.

By mid October Landon was completely off the TPN but his direct bilirubin was still to high. On Oct 19th his direct bilirubin was 15.7 the normal range is 0-.5mg/dl.

Oct 14, 2020 An MRCP MRI was done to get better picture of what was going on with his liver. Nothing different or new was shown in the results. The doctors thought was that the bile ducts higher in his liver were plugged. So, a drain directly into the bile duct called a biliary drainwould need to be put in. The doctors had never placed this drain in a baby this little before.

Oct 16, 2020 The biliary drain was placed. Drs were still puzzled, questioning a possible choledochal cyst. Landon’s surgeon was still not fully convinced it’s a cyst, as cysts usually are found much later in life. He thought there was a buildup of sludge. With the biliary drainLandon’s direct bilirubin finally started to go down, from the 15.7 to 6. Either way the biliary drain bought us some time to try and figure out what needed to be done and give Landon a chance to grow.

On October 28th they placed a Nasojejunal (NJ) tube that is put in through the nose and goes through the stomach into the jejunum part of the small intestine. The NJ tube would allow thebile to be refed every four hours by collecting the bile and then refeed the bile via a feeding pump. Refeeding the bile helps to keep his sodium and electrolytes balanced. Bile is also important in the absorption of nutrients and vitamins.

Nov 2 2020 The GI doctor did not like what she saw on the last liver ultrasound. Blood is starting to flow the wrong direction, meaning a possible Liver transplant was down the road for Landon.

Nov 7, 2020  We met with transplant doctor, he reminded us that Landon was still very small to undergo a transplant surgery.  He suggested we let Landon grow more before they’d place him on the transplant list. The goal was to get Landon as close to 22lbs or more to give him a better chance of having a successful transplant. It generally takes about 3-6 months to find a match butcould be up to a year or more. The transplant surgery is difficult and takes up to 8-10 hours.

Nov 16 2020 Landon had another MRI and they changed the biliary drain out. They also tried to place stent to open the bile duct and replaced his external biliary drain. Unfortunately placing thestent was unsuccessful.

Nov 29, 2020 After 218 days in the NICU Landon finally got to go home. He went home with 3 drains and NJ tube, but home!

Feb 13, 2021 Landon had eye surgery to help correct his retinopathy of prematurity (ROP). They also had to exchange his biliary drain. (Replacement of his biliary drain every three months isroutine maintenance to help lower risk of infection and to keep it from clogging.)

June 4, 2021 Landon had surgery again attempting to place a stent in his bile duct, in hopes of losing the biliary drain and NJ tube. Since the bile cannot go in his stomach, we are stuck with the NJ tube until he no longer needs the biliary drain. The stent placement was unsuccessful. Theteam of doctors working together with an Interventional Radiology (IR doctor) and a Gastroenterologist tried to scope through his mouth, but they just could not get passed the blockage in his bile ducts.

June 10 2021 Landon had another sedated MRCP MRI to try and give the doctors more insight as to what’s going on.

June 22 2021 After routine appointments and an ultrasound, the doctors were concerned about a portal vein clot. They discussed if he should have surgery to try and break up the blood clot, or towait and watch for liver failure and move forward with transplant. The team was unsure at the time of what to do, especially since doctors needed for surgery were not available. It was decidedsince Landon looked healthy, they would send us home, but warned they may call us back and want to admit him. We drove the two hours home then got the call saying be back down by 11 am the next day to admit him and try blood thinner injections.

June 24, 2021 the CT scan showed there was no blood clot, but the portal vein was very small. Landon was to continue with blood thinners to prevent a blood clot from forming. Landon has blood thinner injections twice daily.

June 28, 2021 Unsure of how to proceed, a liver transplant would be the only alternative. Landon still needed to grow and has had his medical team puzzled. Landon’s his labs look good as the biliary drain is definingly helping, even though it is just a temporary solution and will need surgery every 3 months to exchange the drain, which has its own risks each time.

July 23, 2021 Landon had his fourth liver biopsy. Doctors discussed placing a fistula in Landon’s liver as the vein and artery had started to branch together causing blood flow to be messed up.  A pressure test in the artery in Landon’s neck showed the portal vein being open but very small. They decided not to glue the trouble spot fistula in the liver as it could cause the main portal vein to clot off.

September 17, 2021 We were told the best course with Landon would be a liver transplant. More appointments and more tests were done before they could list him. We were told to get all Landon’s vaccinations done first, since he would be unable to have them post-transplant. Once he received all of the vaccines, we would have to wait 30 days before he could be officially listedfor a transplant.

October 25, 2021 At 18 months old, Landon was officially listed for a liver transplant. Unfortunately, we were told Landon would need to wait for a deceased donor; a partial living donor liver would not work. It’s quite disheartening to know, due to Landon’s small size, a liver for him means it must come from a child.

January 6, 2022 We got a call for a possible liver match. It was a whorl wind and emotional 18 hours. All of Landon’s tests were good but after further review the donor liver was not as healthy and could not be used. The medical team wanted to give Landon the very best chance of the transplant working.

Fast forward a long roller-coaster of highs and lows in the NICU journey. With too many to count, pokes, ultrasounds, tests, contrast studies, blood transfusions and covid tests for every sedated procedure or surgery, we continue on with his transplant journey with more counts, labs, ultrasounds, test, contrast studies, and a few hospital stays for possible cholangitis from his biliary drain. Medical staff is still uncertain, as to why or what’s really going on with Landon’sliver. Genetic testing did not reveal anything to explain the issues Landon is having. We do know there is a biliary obstruction, but the exact cause is unknow. They think it could be inflammatory stricture, choledochal cyst, or inspissated bile, but probably less likely biliary atresia. It is frustrating to not have answers, but we do know that the only fix for Landon is a transplant. We keep praying and know that once Landon receives his life saving liver transplant, it will all be worth it to see our happy loving boy grow up. If he can keep a smile on his face through everything he has been through, we will do everything humanly possible to support him and be there for him every step of this crazy journey.

Thank you for taking the time to read Landon’s journey so far. Please continue to keep Landon in your prayers, as a transplant is a lifelong concern. Post-transplant he will have more appointments, labs, medications, and precautions the rest of his life. We appreciate all the support you and the growing community of people around Landon has given our family.

We have decided to partner with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses.  Please consider donating to COTA in honor of Landon. COTA funds are available to him for his entire lifetime. COTA funds raised will not only support Landon for his transplant, but also for any transplant related medical expenses in his future.

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 each patient helps meet 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.

Again, our thanks to each and every one of you for being there for us and especially for Landon.