PORT CHARLOTTE -- On Sunday, Meikah Heaton will be 6 months old. That she'll reach this milestone on Mother's Day is a special blessing for her mom, 18-year-old Michaela Morse.
For her first Mother's Day, this young local mom has only one wish: "(For) my daughter to get better."
But for that wish to come true, she's going to need a lot of help. And time is running out.
Little Meikah suffers from biliary atresia, a congenital disorder affecting her bile duct, liver and small intestine, according to the infant's pediatrician, Dr. Ben Helgemo, of Helgemo & Liou Pediatrics in Port Charlotte.
Her liver is failing and the persistent threat of infection means her life is at risk every day, Helgemo said. Without a liver transplant, he said it's doubtful Meikah will survive very long.
According to Morse, her daughter is high on the national list to receive an organ from a deceased donor, but none has become available since November. A partial donation from a living donor -- ideally a relative -- is a good option.
But the total cost associated with donation is about $100,000, Helgemo said.
Meikah's insurance won't cover it, so Morse is reaching out to the community for help.
Scary diagnosis
Morse said the first weeks of Meikah's life were normal. "I was really excited," she said. "You tell yourself nothing bad will ever happen."
Then came a sign of trouble: Meikah kept turning yellow from jaundice -- an indicator of liver problems. The frightening diagnosis that she had biliary atresia came when the baby was just 5 weeks old.
"Until it happens to you, you have no idea," Morse said. "I didn't know this disease existed."
Although pediatricians are aware of the condition, it is fairly rare, Helgemo said. Meikah's physicians already attempted corrective surgery -- called a Kasai procedure -- but it failed, Helgemo said. It can't be repeated, which makes a liver transplant the only remaining option.
Meikah has been in and out of the hospital ever since her diagnosis. Most of the care she needs is so specialized that Morse has to bring her to Shands in Gainesville , a premier health system affiliated with the University of Florida .
Now, Morse said, Meikah is no longer yellow, but "neon green." The baby weighs about 13 pounds, and she continues to lose weight. She recently had a tube inserted to aid in the delivery of crucial nutrients to her system.
Meikah is set to return to the hospital Monday, where doctors will try to reduce the fluid buildup that makes her abdomen look like she is "nine months pregnant," as described by Ashley Paille, a medical assistant who works with Helgemo and who is championing Meikah's cause. That fluid is a huge source of her infection risk, Helgemo said.
System failure
Meikah is enrolled in Florida 's Medicaid system. It covers medically necessary transplant procedures like the one she needs, but not those costs associated with living donors.
"Medicaid does cover liver transplants," said Shelisha Durden, a spokeswoman for the state Agency for Health Care Administration, which administers Medicaid in Florida . But, she explained, donors are covered only if they also are Medicaid recipients and the transplant procedure is medically necessary for the donor -- conditions rarely, if ever, met.
Morse estimates at least 15 of Meikah's family members -- a likely source for a good donor match, Helgemo said -- are willing to be considered for donation. But without funding secured for the donor side of the procedure, the process has stalled, Morse said.
Ways to help
Morse sees the daily progress of her daughter's disease. She is afraid Meikah doesn't have much time left.
Anyone who wants to help can go to any Regions Bank branch and donate to an account set up in Meikah Heaton's name, Morse said.
Also, thanks to Paille's advocacy on Meikah and Morse's behalf, the Children's Organ Transplant Association, a 501(c)(3) nonprofit, is stepping in to assist with fundraising efforts. The agency acts as a trustee for collected funds, paying directly or reimbursing transplant-related expenses, said representative Lyndsi Bennett.
To donate to Meikah through this organization, send a check payable to COTA, with Meikah Heaton's name in the memo line, to COTA, 2501 COTA Drive , Bloomington , IN 47403 . Donations also can be made online at www.cota.org (click on the button to find a COTA family, then search using Meikah's name). For more information, call Bennett at 800-366-2682.
"(I want) what any mother wants whose baby is sick," Morse said. "(Anything people could do) would help a lot. I'd appreciate it."
If you want to help
* Go to any Regions Bank branch and donate to an account set up in Meikah Heaton's name.
* Or, donate through the Children's Organ Transplant Association: Send a check payable to COTA, with Meikah Heaton's name in the memo line, to COTA, 2501 COTA Drive , Bloomington , IN 47403 . Or go online to www.cota.org (click on the button to find a COTA family, then search using Meikah's name).
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