OAKLAND, Calif. - From the very start of his life, Kingston MacFarland couldn't seem to gain weight.
When he was born in April, the boy was relatively small, just 6 pounds and 6 ounces, but as the days and weeks passed, the number on the scale wasn't moving much.
"He was gaining maybe 4 ounces a week, which is like the very bare minimum. (Doctors) like to see newborns gain between a ½ ounce and an ounce a day. They wanted to see him pick up more weight, and they didn't understand why he wasn't,'' said his mother Lisa MacFarland.
MacFarland, a 36-year-old single mother who also has a 2-year- old son, was breast feeding Kingston, feeding him milk generated by a breast pump and supplementing the feedings with formula.
At 2-weeks-old, MacFarland took Kingston to see his pediatrician who told her to continue the intense feedings and come back in about six weeks.
She did as she was told.
It was then that the doctor ordered a chest X-ray, an ultra sound and blood work to try to determine why Kingston was not putting on weight.
"His liver labs were slightly elevated, but the pediatrician didn't have a reason to be super alarmed,'' MacFarland said. "But they redid the labs and doctor called me and said ‘you need to go to UCSF tomorrow.'"
There, it was a world of tests, tubes, countless doctors and specialists and more waiting.
Doctors at UCSF Benioff Children's Hospital were attempting to rule a rare liver and bile duct disease called Biliary Atresia.
"I had never heard of it,'' MacFarland said who lives with her parents in the North Bay. "I spent most of the night Googling. It's a terrifying disease, and I was just really praying that wasn't it."
But that was it
And that meant Kingston would likely need a liver transplant to survive.
Doctors, however, wanted first to do an operation called the Kasai Procedure, which can, restore bile flow and recover liver function.
But the procedure only has a long-term success rate of 30 percent. It also takes three months to determine if the operation was successful; Kingston had the operation in June, but doctor's won't have the final results until late September.
But MacFarland said there are already indications that she and Kingston will be faced with bad news.
"They don't think it was successful,'' she said.
Again, it seems, nothing is working.
Now, the search is on for what is called an altruistic liver donor—a living person who can donate a lobe of his or her liver that would be transplanted to Kingston.
It's a better option for the baby than waiting on transplant list to receive a liver from a deceased person, said Dr. Emily Perito, the assistant medical director of pediatric liver transplants at UCSF.
That's because a person actually has to get sicker in order to move higher on the transplant list.
"Having a living donor means that he wouldn't have to be sicker, he can grow bigger, and they can schedule a transplant for the optimal time for him, before he gets too sick,'' MacFarland said. "Living liver donation is not discussed enough, and it's so very important since there aren't enough livers to go around."
MacFarland knows much more about the vital organ, liver transplants and BIliary Atresia than she'd like to know.
Biliary Atresia, which affects one in 8,000 to one in 18,000 newborns worldwide each year, is the most common cause of liver transplants in children in the United States.
"I had never heard of it before my son was diagnosed, and I surely never thought I'd be going through this with my child,'' said MacFarland. "As you can imagine, my world has pretty much stopped. Without help from my parents, I'm really not sure how I'd be dealing with any of this."
Just last week, Kingston was admitted to UCSF because he had a fever and a common bacterial infection.
"During this visit I've seen hepatologists, cardiologists, occupational therapists, dieticians, an anesthesiologist, the social worker, and the transplant surgeons,'' MacFarland said at the time.
Kingston stayed in the hospital for three days and was then sent home with antibiotics, and a feeding tube to help him gain weight.
"The bigger you are the less likely you are to have (liver transplant) complications, such as blood clots," said Perito, adding that he should be closer to 20 pounds to receive a transplant.
Kingston currently weighs just under 13 pounds, which is several pounds lighter than World Health Organization recommended growth standards.
Over the past several months, MacFarland said every aspect of her life has changed drastically.
"I'm worried about insurance, and my job and keeping everything and everyone balanced. This is really hard on big brother too. I'm exhausted. I'm aging quickly. I'm sad."
She said she's also scared.
"I can't figure out how I'm going to go back to work. It's not like I can just send him to daycare,'' she said, adding that Kingston requires medication four times a day and must take his food through a feeding tube four times a day in addition to breast feeding.
It's not the life she had imagined for Kingston.
She desperately wants something to work.
"My sweet baby should be focused on playing with his toys and rolling over."
If you are considering liver donation, you must:
- Be 60 or under
- Be in good physical and mental health
- Have a BMI under 30
- Be a nonsmoker or quit at least six weeks before surgery
- Be willing to not drink alcohol for six weeks prior and three months after surgery
- Understand the risks of surgery
- Be motivated to donate for altruistic reasons
Things to know about the liver and transplant surgery:
- An adult liver is about the size of a medium cantaloupe
- The liver weighs about 3 pounds and about 1/3 is removed during transplant surgery
- The liver grows back after surgery
- UCSF has done roughly 4,000 liver transplant surgeries over the last 20 years
To see if you are a potential match for Kingston MacFarland, go to http://www.ucliverdonor.org/#_.He was born on April 13, 2019, which is necessary information for the questionnaire.