A Sacramento family navigates a health care crisis and a rare disease. Can a donor be found for their 6-month-old? Jose Luis Villegas The Sacramento Bee
A Sacramento family navigates a health care crisis and a rare disease. Can a donor be found for their 6-month-old? Jose Luis Villegas The Sacramento Bee

Marcos Bretón

Connecting the dots on issues, people and news in the Sacramento region

Marcos Bretón

Saving Noah: A Sacramento family, their infant son and a rare, often fatal disease

By Marcos Bretón

mbreton@sacbee.com

August 31, 2017 12:51 PM

UPDATED September 01, 2017 11:46 AM

A 6-month-old baby shouldn’t be fighting for his life. He shouldn’t have to be hurriedly baptized in a hospital room in advance of an emergency liver transplant. His young parents shouldn’t be stricken by grief and guilt during what should be a glorious period in their lives.

 
Opinion

But this is where the Hernandez family finds itself. They currently are keeping vigil more than 100 miles away from their home in Sacramento, at the Lucile Packard Children’s Hospital Stanford in Palo Alto, praying for their son to survive an extremely rare disease that can be fatal unless luck and fate intervene.

The Hernandezes soon will find out if good fortune is on their side. They’ve had their hopes raised and dashed so many times they’ve lost count in the two months since baby Noah was diagnosed with biliary atresia. It’s a condition that occurs in infants when bile flowing to the gallbladder is blocked and accumulates in the liver, eventually causing liver failure.

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This past week, Noah’s liver began to shut down. That was traumatic enough, but it occurred less than two weeks after a procedure that was supposed to buy Noah time and grant him a respite from the hospital visits that have consumed the lives of his parents: Reymon, 35, and Alyssa, 28.

On Aug. 23 – almost six months to the day after Noah was born – Reymon suddenly had to leave his job as a real estate agent to drive to Palo Alto after Noah’s liver had failed. On the way there, Reymon readied himself to donate part of his own liver so his son could live, and tried to keep the negative thoughts at bay.

“I don’t want to get lost in that sentiment of asking why this has happened to my son,” Reymon said this past week. “Once you start asking why, or trying to make sense of this, it makes less sense.”

Noah Hernandez was diagnosed with a rare liver disease called biliary atresia, which affects 1 in 18,000 children.
Jose Luis Villegas Jose Luis Villegas

It wouldn’t be unreasonable to at least wonder why or how your baby – your first born – could contract a disease that affects only one in 18,000 infants, according to the National Institute of Digestive and Diabetes Kidney Diseases.

Noah was born a few weeks premature, and a little small at 5 pounds, 6 ounces, but Reymon said there was nothing to indicate what soon awaited them. Noah went home with his family and everything seemed fine, except that Noah seemed to have a touch of jaundice. Reymon said Noah’s pediatricians didn’t think there was a problem. Jaundice is not uncommon in newborns. The Hernandezes took the word of their doctors, though they never stopped being concerned.

Did Noah have colic? Why was he so fussy? He kept growing and hitting his developmental benchmarks, but his parents felt something wasn’t quite right. At 4 months, Noah’s doctors ordered more tests and discovered his condition.

At first, Reymon and Alyssa blamed themselves. Maybe if they had pushed harder for more tests earlier, Noah would have been spared some suffering. Each day became an emotional collision of parental guilt, concern for their baby and medical uncertainty.

“That part has been a roller coaster,” Reymon said. “It’s been hell, our worst dreams come true.”

On that emergency drive to Palo Alto, Reymon said he was hopeful he could be the liver donor for his son. But after being tested, he found out he wasn’t a suitable match.

Then, some news that inspired both sadness and hope. Reymon’s work colleague knew a family that had just lost their 17-year-old son to suicide. Reymon also knew this family. The colleague contacted them: Would they consider donating their son’s organs?

Coincidentally, the grieving mother already had thought of Reymon and his family. They would donate their son’s liver in the hope that it could help Noah.

How do you make sense of this? A baby afflicted with a rare disease just might be saved through the goodwill of the heartbroken family of a young person who took his own life?

Raymon Hernandez, on Aug. 14, 2017, fills out paperwork before an MRI that will determine if he can be a liver donor for his infant son Noah.
Jose Luis Villegas Jose Luis Villegas

On Aug. 25, the Hernandezes were told that the young man who had committed suicide was a match for Noah. Preparations began for Noah to have transplant surgery that day. But after their son had been wheeled into surgery, Reymon and Alyssa were astounded again.

Noah received a liver transplant, but it wasn’t from the grieving Sacramento family. There was a delay in harvesting his organs and in the interim, surgeons at Stanford had aligned Noah with the liver from another donor.

The quick connection to the second liver proved vital. While operating on Noah, doctors realized he was far sicker than they had imagined. “His liver was rock hard,” Alyssa said.

The greatest threat for rejection of a liver transplant is in the first two weeks after surgery. And after that, within the first three months. That means the Hernandezes will stay in Palo Alto for the foreseeable future.

“I’m still numb, but we’re hopeful,” Alyssa said.

“The doctors told us that at least now he has a fighting chance,” Reymon said. “That’s all my son needs.”

The couple hopes to contact the family who donated a liver to their son. They want to embrace the family that tried to help them through their own tears. They are grateful to their faith community at the Church of the Good Shepherd in Arden Arcade. They have been uplifted by friends who have offered moral support and set up a GoFundMe account for them – www.gofundme.com/noahstrong17 – to help with costs.

Noah is alive because of organ donorship and the selfless work of the nonprofit Donate Life California, an organ, eye and tissue donor registry based in Sacramento.

It really works. A baby has a chance at life because of the profound sacrifices made by people who suffer losses and yet think of others. That’s how you make sense of all this. A family experienced tragedy and a community rallied around them. Now all they hope for is a blessing they haven’t experienced in their ordeal.

“Our son has been heavily sedated but if you had seen him before this, you would have fallen in love with his smile,” Reymon said. “We want to see him smile again.”

Marcos Bretón: 916-321-1096, @MarcosBreton