ST. LOUIS 鈥 Kevin Hernandez was in awe as he watched his baby in her hospital crib this week. Her brown eyes, after turning nearly neon yellow, now twinkled. Her tummy was flat instead of bulging from her tiny body. Her orangish skin was a beautiful olive.
鈥淪he鈥檚 just happier,鈥 said Hernandez, 31, of Florissant.
Baby Eden鈥檚 dramatic turnaround from a life-threatening liver disease is thanks to a selfless relative who two weeks ago donated part of her liver to Eden 鈥 the first living donor liver transplant in 狐狸视频 in about 10 years.
Last year across the country, just 658 out of 10,660 鈥 6% 鈥 of liver transplants came from living donors, . But the number of living liver donors has been growing steadily over the past 10 years as the safety of donation improves and the .
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, a Washington University gastroenterologist at 狐狸视频 Children鈥檚 Hospital caring for Eden, said transplant centers across the country are working to improve education about living donor liver donation since the longer people wait for a transplant, the sicker they become, increasing the likelihood of complications.
鈥淕etting the word out about it being an option is really important,鈥 Stoll said. 鈥淎 lot of people don鈥檛 even know that you can donate a portion of your liver.鈥
Eden鈥檚 new liver came from Smita Nadia Hussain, 39, who is married to Hernandez鈥 cousin. Hussain had to travel from her home in New Jersey and be separated for a month from her own children, ages 8, 3 and 1.
Hussain, discharged from Barnes-Jewish Hospital five days after a third of her liver was removed, beamed as she held Eden in her arms.
鈥淚 would do the surgery 1,000 times over if I could save her,鈥 she said.
Eden, almost 7 months old, left the hospital Thursday to go home. And Hussain flew to her home to Bloomingdale, New Jersey.
鈥淚t seems like this miracle to me,鈥 said Eden鈥檚 mom, Sarah Hernandez, 29. 鈥淭hat all of this happened at the right time.鈥
She and her husband watched Eden get to the point where she needed a feeding tube to maintain her blood sugar. Her blood could not clot quickly, making any big bump dangerous. Toxic compounds that the liver normally processes built up in her body. She would vomit after feedings.
鈥淭here were times where I laid in bed and would think, 鈥楢m I going to lose her?鈥欌 Sarah Hernandez said. 鈥淎re we going to get a liver in time?鈥
Certain criteria
Hussain intently followed a Facebook page 鈥溾 that the Hernandezes created after Eden underwent surgery for on Sept. 15 when Eden was just over 2 months old.
It鈥檚 a rare condition 鈥 about 1 in every 12,000 births 鈥 in which the liver鈥檚 bile ducts are blocked. Bile, which helps with digestion, builds up in the liver and damages it, leading to scarring.
Symptoms usually appear two to six weeks after birth and include a yellowish color of the skin (jaundice), pale stools and dark urine.
The Hernandezes, as new parents, took Eden to the emergency room when she was 2 weeks old because of her jaundice, but the doctor brushed it off, saying it would eventually clear up, Sarah Hernandez said.
Worsening symptoms prompted the parents to take Eden to see her pediatrician, who ordered a blood test. Within a few days, a liver biopsy at 狐狸视频 Children鈥檚 Hospital confirmed biliary atresia and Eden underwent .
The operation connects the liver to the small intestine by going around the abnormal ducts. It is most successful if done before eight weeks, but many children will still need a liver transplant.
Unfortunately, Eden鈥檚 liver started to fail again, and on Dec. 6, she ended up back at Children鈥檚 Hospital, where she would stay.
Staff began the detailed process of evaluating and listing Eden for transplant. She was listed Dec. 19.
But as the days wore on and Eden鈥檚 condition worsened, a match never came. The Hernandezes considered donating, but they weren鈥檛 good candidates. Neither were close family members.
On New Year鈥檚 Eve, they decided to post on Eden鈥檚 Journey Facebook page: 鈥淪eeking Liver Donor For 5 Mo Old Baby with Type O Blood in 狐狸视频, Mo.鈥
Nationally, while waiting on the liver transplant list, they wrote. Donating a piece of liver is possible because it will regrow.
They warned that the donor had to meet certain criteria: have health insurance, be between ages 18 and 45, average weight, no diseases, non-smoker, able to travel to Barnes-Jewish Hospital, and able to take four to eight weeks off work.
Hussain saw the post. She had been following their journey, feeling helpless from afar. Eden was just a bit older than her youngest. They even looked alike.
鈥淭he thought of another woman losing her child,鈥 Hussain said. 鈥淭here鈥檚 nothing worse.鈥
She met the criteria. She looked at her husband, 鈥淪hould I message her?鈥
A paradox
A small number of living donor liver transplants were first performed for children in the U.S. in 1989. The number grew sharply around the turn of the century as the procedure expanded to adult-to-adult transplants, reaching more than 500 in 2001.
Over the following years, however, the number dropped substantially to just over 200, .
The report partly blamed 鈥渁 few living donor deaths,鈥 but mainly pointed to the introduction of the MELD system 鈥 a calculated formula that prioritizes the sickest candidates age 12 and older for a liver transplant.
The scoring system helped better identify those who needed transplants urgently, decreasing the need for living donors. Another similar system is used to identify the sickest under age 12.
The number of living donor liver transplants began to rebound after 2009, however, topping more than 500 again in 2019. It has continued to grow to 658 last year, along with liver transplants overall.
, the Washington University chief of transplant surgery at Barnes-Jewish, points to overall improvements in transplants from both live and deceased donors, including ways to better test the quality cadaver organs, and more detailed imaging of liver anatomy to make surgery the safest possible for living donors and recipients.
鈥淵ou do multiple things all at the same time to be sure you鈥檙e using every strategy you can,鈥 Chapman said.
Also, in February 2020, new liver distribution polices were implemented to get livers to the sickest patients regardless of where they live. The policies allow livers from deceased donors to be transported to recipients farther away.
But that also has meant that those who are not as sick but closer are waiting longer to get an organ.
鈥淚t鈥檚 kind of a paradox to say you are going to have to get sicker and sicker, which means the results aren鈥檛 going to be as good, there鈥檚 going to be more complications,鈥 Chapman said. 鈥淏ut that鈥檚 just the way the order of waiting is.鈥
Chapman said the change is one reason why the transplant center is making sure candidates are educated about the option of living donation and what support services are available.
鈥淭hat鈥檚 why we want to expand living donation,鈥 he said. 鈥淭hat鈥檚 our plan. That鈥檚 our goal.鈥
Chapman said donors undergo screening and tests to ensure safety for both the donor and recipient.
A donor鈥檚 mental health is also important, he said. 鈥淲e want to make sure there鈥檚 no coercion involved, that no one has feelings of guilt or some pressure to be a donor.鈥
Donors are informed of the risks, Chapman said, which are similar to those of other major surgeries: blood clots, infection and excessive bleeding. There鈥檚 a chance 鈥 though extremely rare 鈥 that their liver might not regenerate. The mortality rate is less than 1%.
鈥淲e are very comfortable that the risks are pretty minimal for the donor,鈥 he said.
Rolls-Royce of livers
When Hussain told the Hernandezes that she wanted to apply to be a donor, they were concerned. She鈥檚 so far away. She works. She has three kids. 鈥淚t鈥檚 a big thing to ask,鈥 Kevin Hernandez said.
Hussain was insistent. She called the transplant team and was quickly asked if she could get a flight to St Louis. She got time off work and arranged for child care. Her husband was worried, she said, but supportive through the process.
Hussain was happy to pass the screening with flying colors, joking she had the Rolls-Royce of livers. To her, it didn鈥檛 seem any more risky than the C-section she had for her third child.
In fact, she likened it to the joy of giving birth.
鈥淎nything I can do as a mother to another mother,鈥 Hussain said, 鈥渢o give her a life with her child.鈥
Eden鈥檚 new liver will grow along with her as she grows. Eden will need to take medications for the rest of her life. There are many factors and unknowns, but Stoll, Eden鈥檚 doctor, said she is hopeful the liver will last a long lifetime.
Hussain鈥檚 liver is expected to quickly regenerate within a month and keep growing until it reaches its normal size for up to a year, Chapman said. Other than taking it easy from surgery, she has no restrictions.
Hussain was lucky in that she works for , a grassroots organization that advocates for economic security for families through things like paid family leave, affordable child care and equal wages. Hussain said she got eight weeks of paid time off from work.
She also got critical help through the , a nonprofit that helps donors with the cost of things like flights and child care.
Stoll said such supports for living donors would encourage more to step forward, especially altruistic donors 鈥 those who donate an organ to strangers.
鈥淲e need more advocacy work, to help them take time off work and have that protected time and space to recover,鈥 Stoll said.
Sarah Hernandez said she can鈥檛 convey with words or gifts how grateful she is to Hussain. The best thing she can do is raise her daughter to be caring and kind.
鈥淪eeing her grow into a good person,鈥 she said, 鈥渉opefully that will show how thankful we are.鈥
Editor鈥檚 note: Dr. Janis Stoll is a gastroenterologist. An earlier version of this story was incorrect.