3/1/2013 9:57:00 AM
Enon girl home after liver transplant
Parents of 16-month-old face growing follow-up health care costs
By Linda Collins
ENON — Sixteen-month-old Claire Kaufman, who inspired several local communities to raise $34,224.27 to help pay for her liver transplant-related expenses, has returned home, but not without facing some obstacles along the way, including growing follow-up care costs.
The daughter of Enon residents Kevin Kaufman and Leah Moliengo received her life-saving liver on Jan. 2, but her discharge was delayed when Claire tested positive on Jan. 21 for the highly-contagious norovirus.
“The baby was a sick little girl and had a rough few days,” said Sherry Matsel, Media Representative for the Children’s Organ Transplant Association (COTA). “Since Claire is an immune-compromised child, it took longer for her to recover.”
The liver transplant recipient also experienced problems with elevated enzyme levels earlier in February, causing concern among physicians that the baby was experiencing organ rejection.
Since a rise in liver enzymes is often the first sign of rejection, Matsel explained, physicians at Cincinnati Children’s Hospital Medical Center ordered an ultrasound on the baby’s liver and performed a liver biopsy on Feb. 6. The results of the biopsy indicated that Claire’s liver was functioning well without any indication of rejection. However, the baby lost more blood than physicians had anticipated and subsequently, required a blood transfusion.
According to Matsel, the baby’s enzymes levels elevated again last week, and physicians performed another liver biopsy on Claire on Monday. Again, the news was good.
“She is not rejecting her liver,” said Matsel. “Leah said that before the biopsy, her mother’s intuition was telling her that Claire wasn’t rejecting it.”
Moliengo also posted on Claire’s Facebook page that physicians may soon remove the baby’s nasogastric (feeding) tube which Claire has had since birth.
“I am so happy about that part! I don’t know what I am going to do without it,” Moliengo posted. “I’ve grown to accept the tube, but it is time for it to hit the road! Claire is one step closer to being a normal toddler!”
Since returning home, after being discharged on Feb. 11, Claire’s parents have enjoyed watching their baby daughter swiftly develop.
“Claire has become more active, and it is obvious that she feels so much better than she ever has,” Matsel recounted. “She is more playful and interactive, and they can see her starting to develop in ways that had been delayed because she was so sick with biliary atresia.”
On Valentine’s Day, Claire’s parents held a small, but special, Valentine’s Day celebration for their baby daughter.
According to Matsel, Moliengo reminded everyone that Valentine’s Day was also National Donor Day, and the young mother said she would be forever grateful for her daughter’s donor, who had a huge spirit, “because my Claire is even brighter than she was. I’ve got the best Valentine gift ever.”
Claire’s grandmother, Diane Kaufman, also reported that the little girl has grown and currently weighs almost 17 pounds. Now that Kaufman is fully trained in proper homecare techniques, Claire’s parents were making a much-anticipated return to their jobs this week. Yet, the liver biopsy on Monday delayed those plans and subsequently, expected incomes in the next few weeks.
Although Claire’s medical condition continues to improve daily, her family is faced with sizeable medical expenses related to her transplant. Claire’s follow-up care consists of a daily regimen that includes vital anti-rejection medications. The complications that extended Claire’s hospital stay and necessitated additional medical treatment have also added to her mounting medical expenses.
Known as “Claire’s Kare Bears,” family, friends, and community volunteers, including Matsel and COTA Community Coordinator Elise Click, continue their quest to meet the fundraising goal of $50,000.
Those who wish to make an online donation can visit www.CotaforClairek.com and click “Donate.” All donations are fully tax deductible, and 100 percent of all money raised goes directly to Claire’s transplant-related expenses.
Individuals can also register their Kroger Rewards Card at www.krogercommunityrewards.com. The organization number is 83263.
For more information about COTA or donations, please contact Elise Click at 937-206-5606 or Sherry Matsel at 937-878-9707.
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