On Jan. 21, 2008, Jerry and Lyndall Young and their son Doyle of Delta were blessed with a precious little girl. She was named after her mother and great-grandmother — Lyndall Ella. She was perfect. Doyle started calling her Lella, combining the “L” from Lyndall with Ella, and it stuck. Little did her family know that she was going to take them on quite a ride during the following year.
At her two-month well child check, her pediatrician thought it might be a good idea to get some blood work done because the whites of her eyes were a little yellow. The results of the blood work showed need for an ultrasound of her liver at St. Mary’s. Prayers were requested from church friends and family, not knowing what was ahead. Within hours of the ultrasound, Lella’s mother had spoken with three different people from Children’s Hospital in Denver, scheduling appointments for the next day with some of the top pediatric liver specialists in the U.S.
“At those doctors’ request, we left Grand Junction and went straight to Denver, without even going home to pack,” said Lyndall.
Children’s Hospital is an amazing place! During the next week, Lella had many tests done, including a liver biopsy. This was the first of 18 times she was put under anesthesia before she was 9 months old. She was diagnosed with biliary atresia, a very rare condition that closes the tube that drains the bile from the liver into the intestine. There is no known cause and it is not genetic. Lella and her parents are in two research studies through Children’s Hospital trying to find out more about this condition.
That Saturday, March 29, 2008, at two months of age, Lella underwent a five-hour surgery to try to repair her condition. The procedure is called the “Kasai” after the Japanese doctor that invented it. Doctors remove the tube that is closed, along with the gallbladder, then attach the intestine to the liver to try to let it drain. After the surgery, specialists said that the kind of biliary atresia Lella has occurs in approximately 1 in 100,000 babies.
They were able to come home after another week at Children’s, knowing that the next three months would show if the Kasai surgery was going to work, or if the liver was too damaged to start draining. Lyndall’s parents, Les and Melissa Hamilton, took them back weekly at first for routine doctors’ appointments in Denver. Everything seemed to be going well at first. Lella was gaining weight and her labs were looking better.
“We knew that two-thirds of biliary atresia babies needed a liver transplant in the first few years, but were hoping and praying for the best,” Lyndall said. “When we went to Denver for her three-month appointment on June 18, we knew something was not right. Lella’s stomach had been getting bigger and harder for a couple of weeks.” Upon arriving at Children’s Hospital and speaking to Lella’s pediatric liver specialist, Dr. Cara Mack, the family was told that Lella had to be admitted right then. “The next few weeks were a blur,” Lyndall said.
Lella had ascites, which is when extra fluid fills up her abdominal cavity because her liver was not draining right. At first they tried to manage the extra fluid with medication, but soon had to do more. Lella had to have a tap, be put to sleep and the fluid drained off. The ascites turned out to be one of the biggest and most uncomfortable problems, coming back time and time again. Lella had 14 taps in total during their stay in Denver, having to be under anesthesia each time.
Weight gain was another issue. Since the liver was not draining any bile into the intestine, she could not absorb any nutrition. They put a feeding tube down her nose and started giving her special formula, but soon found that was not enough so they put in a central line, an IV that goes into the heart, and started IV nutrition. She finally started to gain some needed weight! The entire time, Lyndall pumped and kept her breast milk up so Lella could start nursing when she was ready. The doctors said she was the only mother to have done that and a nutritionist could not have been happier, calling it “liquid gold.” They remained in Children’s Hospital, on the eighth floor in a room that family also were able to stay in. “We never left Lella alone,” said Lyndall. Lella was having tests almost every day, including multiple CAT scans, ultrasounds, X-rays, and one nuclear scan. All showed that the liver had stopped draining. On July 7, Lella was officially put on the organ transplant list. “The doctors told us that an organ could come any time, 24 hours to two months,” Lyndall said. Because of Lella’s type of biliary atresia, the doctors said it was very important that she receive a cadaveric donor liver. Some of the veins around her liver would be the size of a hair and with a cadaveric donor, some of the donor veins could be used as well.
“We made the best out of our time on the eighth floor of Children’s Hospital,” said Lyndall. Lella’s maternal grandparents, Les and Melissa Hamilton, stayed the whole time, along with Lella’s brother Doyle. Jerry would drive up on weekends from work. Many family members and close friends were in and out all summer. Jerry and Lyndall said they were thankful for every day and made the most of being with family.
On July 27, Jerry and Lyndall were awakened at 3 a.m. and told that Lella’s sodium level was dangerously low and they were being moved to ICU. The next 48 hours went from bad to worse. Blood samples were taken every two hours, doctors tried for additional IV access, to put another central line in her neck, and do another tap. During this time her blood pressure dropped dangerously low and she had to stay intubated and on a breathing machine for three days.
Needing multiple blood transfusions and many new medicines to keep her blood pressure up, Lyndall’s brother, Huntley Hamilton, Lella’s father Jerry, and Steve Whiting, a family friend — all with the same blood type as Lella — donated all of the blood she received.
“Lella, being the fighter that she obviously is, fought back and got off the breathing machine and we continued to wait in ICU for a liver,” said Lyndall. “Although waiting was hard, we stayed in faith that the right liver would come at the right time.” Lella’s family became very close to all of the doctors and nurses, often praying with them, as they continued to strive to keep Lella alive and healthy enough to receive her liver when it came. On average she would see 10 different doctors a day, plus a whole team of nutritionists, therapists, counselors, and transplant coordinators.
“Lella had a couple of close calls on livers and we were even down in the operating room on one occasion,” Lyndall said. Each time, they received news that they were not the right one for Lella. She turned a bright glowing orange color and she went into hepatic renal failure, which meant her kidneys were also starting to fail.
“On Aug. 22, 46 days after Lella was listed, we got the real call in the middle of the night that a liver was coming from out of state and that Lella was first in line for it,” Lyndall said. Lella went in at 4 p.m. for a 10-hour surgery. Willyn Webb, Lyndall’s sister, sent out yet another e-mail to over 90 people that went on to many prayer chains. She had been sending e-mails to update friends, family and prayer chains from the beginning. “We felt hundreds of thousands of people praying for Lella all over the world,” said Lyndall.
She came through the surgery well. Dr. Fritz Karrer, the top pediatric liver surgeon in the western United States, said it was the best liver he had seen all summer.
The first 24 hours did not go well and late the next day, Lella went back into surgery to stop internal bleeding. The surgeon worked until after midnight and felt like he had gotten the bleeding stopped. Everything looked to be a go, but in two days the doctors found that the portal vein (the main vein draining the liver) was not draining, so they took Lella back into surgery again and used part of the donor’s vein that had been saved to replace the portal vein.
Immediately the new liver started working and now it was draining correctly too. Things were finally looking up. Lella was soon off the breathing tube and they were stopping meds and taking out IVs everyday. “After 32 days in ICU we were moved to the sixth floor,” Lyndall said. “Only two weeks after her liver transplant, we were released to leave the hospital, but had to stay in Denver for blood work every other day.” After almost three months Lella and her mother were getting to take walks outside, and loving it!
“On Sept. 18, three months after coming to Denver for an appointment, we were leaving with a new liver and a new healthy little girl!” Lyndall said. The time spent in Denver came to over $1 million, just in hospital charges.
The family went back for weekly appointments that continued to show that the new liver was working and Lella liked it. She came home on 10 medications, some that had to be taken two and three times a day. It is the liver team doctors’ goal to have her on only one medication, one year after transplant. She will stay on that medication for life.
Lella is thriving, gaining weight, and doing great. She just had her three-month post transplant appointment and everything went great. Doctors were able to stop two meds.
Lella is on germ isolation because of her lowered immune system. If she were to get sick, it would increase her chance of rejecting the liver. The first year is the most important that she stays well. After one year with her new liver, the chance of rejection goes way down.
Lella is crawling everywhere and is almost to walk. She says many words and plays peek-a-boo, acting just like a 10-month-old should, and is ahead on many developmental milestones. She loves her brother and lights up when he is around.
The family says, “We have been so blessed in so many ways. We want to thank everyone for all of the continued prayers. We could not have done it without our faith and family. Don’t take your organs to heaven; heaven knows we need them here. Be an organ donor! It saves lives like our sweet little girl! We especially want to thank the donor family, and we continue to pray for them. They gave us the most precious gift, the gift of life. Someone said during this, that when you get medicine and God together, miracles happen and Lella is proof of that.”