Daughter’s liver disease helps strengthen bond with mother

Friday, Aug. 31, 2007

Click here to enlarge this photo Staff Photo by Reid Silverman As friends and family look on, Brianna Palumbo blows out the candles on her birthday cake. E-Mail This Article | Print This Story

Diagnosed with a form of liver disease at age 5, Brianna and her mother, Jaclyn, are well-acquainted with doctors at Children’s National Medical Center. They also know more than they ever thought they would about shots, biopsies and other medical procedures.

After a year of treatment and more than 50 blood work tests — each test takes about seven tubes of blood — the mother and daughter are starting a new phase in their lives, one that doesn’t involve a constant supply of medicine and trips to the Washington, D.C., hospital.

According to Jaclyn Palumbo, July tests show that Brianna’s liver disease is in remission, though they will have to wait six months to make sure the disease does not come back.

‘‘It’s a lot to take in. It’s definitely been a challenging year,” Jaclyn said. ‘‘It’s definitely been a long, long year. It’s been challenging, but it’s truly made us better, and we’ll go from there.”

Jaclyn is ready for that step in their lives, as is Brianna, who started second grade last week and just celebrated her birthday.

‘‘Now I don’t have to go through the sickness the shots and medicine would bring,” Brianna said in an e-mail. The hardest part of having a liver disease, she continued, was ‘‘taking shots all the time,” and she said she is happy now that her treatment is over.

Brianna’s health problems are traced further back than the past year, though. According to Jaclyn, she developed acid reflux when she was 4 months old, and then had multiple ear infections for the next several years. It was enough to lead doctors to want to replace Brianna’s eardrums, but as soon as her ear problems began to go away, other problems appeared. Brianna began having severe stomach pain. They made a trip to the hospital, but even after repeat visits, upper endoscopies, colonoscopies, stomach biopsies and a slew of other tests, doctors were stumped.

But Jaclyn was determined to find out what was plaguing her child, and she pushed doctors to keep trying to find the source of her daughter’s pain.

‘‘I was a hemorrhoid to those doctors. I stuck on them,” she said.

As a last resort, doctors ordered a test to check for liver disease. The test came back positive.

‘‘It caught the doctors at Children’s off guard,” Jaclyn said.

Part of that surprise came from not knowing how Brianna contracted the disease.

Transmission of the liver disease that infected Brianna is most commonly passed through unsterile needles or coming in contact with the blood of someone else who is infected. But according to the American Liver Foundation, it can also be passed through a birth mother to her child; by sharing a razor, toothbrush or nail clipper with someone who is infected; or exposure to unclean tattooing or body piercing instruments.

Jaclyn tested negative for liver disease, and to Jaclyn’s knowledge, Brianna had not had any contact with anyone infected, so doctors were left to assume that throughout her previous medical procedures she had been infected by use of an unsterile needle. Jaclyn searched Brianna’s medical history for any documentation that could give clues to where and when Brianna was infected, but came back empty-handed.

‘‘It was a huge thing, the whole situation of not having a source,” Jaclyn said. The doctors ‘‘were definitely surprised to see [the test] come back positive. They still don’t know how she got it.

‘‘It’s just been horrible,” Jaclyn said. ‘‘I can remember laying on the floor crying, wondering why. She’d already been through a lot.”

According to the American Liver Foundation, most people infected with that particular form of liver disease have no symptoms, though some might experience fatigue, itchy skin, joint pain, jaundice, muscle soreness and stomach pain.

Other than stomach pain, Brianna showed no symptoms of having a liver disease, her mother said.

According to the American Liver Foundation, the form of liver disease that infected Brianna was caused by a specific virus and is ‘‘a serious condition that damages the liver and can lead to potentially fatal liver diseases.”

The liver performs more than 5,000 functions every minute of the day to keep the body going, according to the American Liver Foundation. It converts food into nutrients and stores vitamins, minerals and sugars. It also detoxifies harmful substances.

Making Brianna’s liver healthy again is what doctors were aiming for by putting her on a treatment plan that involved what Jaclyn called ‘‘study drugs.” Beginning in August 2006, Brianna took two pills every day and received a weekly injection in her leg, stomach or arm.

‘‘The first shot at Children’s was the worst day of my life,” Jaclyn said, adding that on their way home from the hospital Brianna developed chills and was so weak she couldn’t lift her head from her pillow.

‘‘It pretty much wiped her out,” she said, adding that the drugs also caused Brianna to throw up, develop migraine headaches and thinned her hair. ‘‘It depleted her entire immune system.

‘‘The first time I was scared, then it got easier and I became used to having to go get blood work and checkups,” Brianna said in the e-mail.

Because of Brianna’s deteriorating health and the time Jaclyn needed to spend with her, Jaclyn lost her job in March of this year, but currently is working full time as a model until she can go back to college and continue her studies in the medical profession.

She has worked to make Brianna’s life as normal as possible. ‘‘My mom made sure I could do what I wanted to help me not be different,” Brianna said in the e-mail.

‘‘She’s only 7 and she’s been through a whole lot,” Jaclyn said.

There are long-term side effects Brianna may suffer from the treatment she received for her liver disease, including heart and eye problems, and Jaclyn said she has seen firsthand how those problems affect people when they are older. Before losing her job Jaclyn worked in a cardiologist’s office and repeatedly saw patients come in who had received treatment like Brianna’s.

‘‘No kid should have to go through this,” Jaclyn said.

Jaclyn has worked in the medical field for 12 years, which she said was a big help to her when learning about Brianna’s disease. But, she said, taking care of a family member — particularly a child — is a lot different.

‘‘It definitely is completely different when it hits home,” she said. ‘‘I thought, ‘What do I do?’ I was so used to helping other people.”

Jaclyn realized how much other people wanted to help her when a benefit poker run was held in September 2006 for Brianna, and Jaclyn said close to $8,000 was raised to help pay Brianna’s medical bills.

‘‘There were grown men in tears,” Jaclyn said of those who attended the poker run. ‘‘You think that everybody’s out and about for their selves in our world, but people will pull together and make it happen and help in any way they can.

‘‘She’s my only child, but she’s a gift to me,” Jaclyn said. ‘‘If anything has been a strong part, just her look makes me think I can do this. We can do this together and ... [she’s] definitely been a fighter.”

Jaclyn hopes to start a support group for liver disease patients and their families sometime in the future. She had to travel out of the area to join a support group when Brianna first became sick, and she wants to make sure others don’t have to do the same.

‘‘We’ve made it through and grown a bond that no one can destroy,” Jaclyn said of the past year of Brianna’s treatment. ‘‘She’ll look at it down the road and see that it’s making us better people.”

E-mail Meagan Boswell at mboswell@somdnews.com.