WORCESTER, Mass. (AP) - Her T-shirt read “Strong Girls Make a Strong World.”
And as 2-year-old Rebecca Pagan-Williams chased bubbles around the living room last week, there was little indication that she was anything but a strong girl.
But only a year ago, “Baby Rebecca” was in a very different situation. Her belly was distended, her skin jaundiced, and she was in desperate need of a liver transplant.
Thankfully, that liver arrived May 8, 2017. As the one-year anniversary approaches, Baby Rebecca, her mother Rebecca Williams, and her liver donor Marybeth Sbrogna reconnected to catch up on a year of ups and downs, lots of doctor’s visits, and plans for a party.
“It’s been tough but I’m more shocked and amazed at how good she is doing,” said Ms. Williams, 30, as her daughter played like any energetic toddler.
Ms. Sbrogna, 32, agreed.
“I think I need something of hers in my body,” Ms. Sbrogna joked.
Rebecca Lucia Pagan-Williams, “Baby Rebecca,” was born June 13, 2015, and within a few weeks was diagnosed with a rare liver disease called biliary atresia. Biliary atresia is a disease in which either in utero or soon after birth, a child’s bile ducts are either not present or destroyed in the first few weeks of life. This leads to the child being jaundiced, as bile cannot drain out of the liver into the intestine.
There are two ways to treat the disease. Corrective surgery - performed when Rebecca was 6 weeks old - was unsuccessful. This left the option of a liver transplant.
But most biliary atresia patients need the transplant before the age of 2. Just more than a month before Baby Rebecca’s second birthday, Ms. Williams got the word that Ms. Sbrogna, whose father died awaiting a liver transplant, had received permission to donate a piece of her liver.
The surgery took place May 8, 2017.
It went well.
Baby Rebecca was in the hospital for three and a half weeks. Her expected stay had been three months.
“She was up the first day, trying to take everything off,” said Ms. Williams. “She bounced back so quickly, everybody was so shocked.”
Ms. Sbrogna was in the hospital for five days, four nights.
“Of course the first few days were rough, which is to be expected,” Ms. Sbrogna said. “But I feel like I recovered very quickly … It was the best decision I ever made. I would do it again tomorrow if I had to.”
But the year hasn’t been trouble-free.
The first six months after the surgery, Ms. Williams and Baby Rebecca barely left the house for fear of infections.
“She couldn’t be around any dust or germs, which is basically the outside world,” Ms. Williams said. “We didn’t do nothing.”
“There was a lot of hand sanitizer, too,” added Angel Pagan, Baby Rebecca’s father and Ms. Williams’ boyfriend.
Nevertheless, Baby Rebecca has been hospitalized for illness twice - once for an upper respiratory infection and once for a high temperature - and her transplant history made it mandatory that she stay 48 hours, Ms. Williams reported.
Baby Rebecca has also been hospitalized for breathing difficulties. Around January, she had labored breathing when she slept. The condition worsened and was eventually diagnosed as a severe case of sleep apnea. On April 13, Baby Rebecca went into the hospital for surgery to remove inflamed tonsils and adenoids. While in the hospital before surgery, Baby Rebecca had such low oxygen levels that she had to stay in the intensive care unit for two weeks.
“I said, ’Don’t you let my daughter die up here,’ ” Ms. Williams recalled.
Baby Rebecca now sleeps with a Continuous Positive Airway Pressure machine.
And there is always the concern that Baby Rebecca could still reject the liver.
But Ms. Williams is concentrating on the positive.
“You gotta just live your life,” Ms. Williams said. “You can’t wonder is she going to reject it every day.”
And you wouldn’t know Baby Rebecca had any health issues looking at her as she and her friends played with balloons on the dance floor at a party Saturday. More than 100 family and friends from the Sbrogna and Williams families gathered in Auburn to commemorate the liver transplant anniversary, dancing, eating and celebrating the families’ bond. There was lots of laughing and some tears.
“The whole beautiful thing is a big circle,” said Maureen Sbrogna, Marybeth Sbrogna’s mother, referencing her late husband.
Ms. Williams and Ms. Sbrogna smiled proudly and gratefully as their children played and relatives chatted together.
“It feels like your family just grows because it has grown,” said Ms. Williams.
Ms. Sbrogna agreed, noting her daughters now view Baby Rebecca as a sister.
“It was such a buildup and a fight to be here,” Ms. Sbrogna said. “To know it’s been a year, I just can’t believe it.
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Online: https://bit.ly/2JZr4e4
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Information from: Telegram & Gazette (Worcester, Mass.), http://www.telegram.com
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