Parents PACK Personal Stories – Influenza

Marcelina’s story

Angelina Sigala lost her sister, Marcelina Mendoza, in February 2015, to complications from influenza. She shared her story with the vaccine advocacy organization, Shot by Shot, and recently took part in an interview with the Vaccine Education Center at Children’s Hospital of Philadelphia. The following has been edited for length and clarity.

Can you give a brief account of Marcelina’s story?

When I visited my sister, I knew something was wrong. I knew she was sick. Then, one day, I got a phone call that my sister had stopped breathing and was put into a [medical] coma. I drove for what felt like days to the hospital. When I got to her room, I saw the most horrific sight a person could ever visualize. My sister had several IV bags hanging by her and was on a breathing machine. She was bloated, like a balloon, and her coloring was bad. I started to panic. I couldn’t believe this was happening. My sister was like the glue that held our family together when my dad passed away a few years earlier.

We later found out that my sister had undiagnosed leukemia. The influenza infection caused her lungs to fill with fluid and her kidneys to fail. My sister died two weeks before my wedding. She never even got to see my dress.

Prior to your sister’s illness, what did you think about when you heard someone “had the flu?”

I don’t think my understanding was realistic. I had heard that it could be bad, but I really just thought you would see the doctor and then go home and rest. I really didn’t know how bad it could be or that it could kill someone.

What effects has Marcelina’s death had on your family?

My sister had two children. One of them has autism. When my sister died, my mom had to take over their care. The kids still miss her and ask about her. The one with autism doesn’t understand where she is and that she’s not coming back. As a family, we have had to help my mom the best we can. Financially, it has been a burden. Family members have had to rearrange their schedules, alter their work responsibilities and even move homes to help my mom. Emotionally, it has been really difficult for each of us, especially watching my sister’s children try to adjust.

What effect has Marcelina’s illness had on how you approach health?

I really pay attention to health matters now because I realize without your heath, you can’t take care of anyone else. I want to push people to get a flu shot before they get sick. People need to be educated and hear my sister’s story. I don’t want this to ever happen to another family. It’s a nightmare. Every day we have to deal with it, and so do her children.

Is there anything during your advocacy efforts since Marcelina’s death that has surprised you?

As a sister, when Marcelina died, I didn’t know how to express my anger and sadness or how to tell her story. I knew I had to do something. I still want to give more, like help people not only with the story, but also with getting medical care and being able to cover their medical expenses. I know there are families out there that cannot afford healthcare. Sometimes I feel overwhelmed because I wish I could help those people more.

This is obviously a tragedy for your family. Tell us why you think it’s so important to speak out?

It has affected 100 percent of my life. It was hard. I lost a sister. My mother lost a daughter. Her kids lost a mother. The flu affects millions of people every year. Families go through this every year. The stories need to be told. It’s a story that will touch your whole life. When they posted my story on Shot by Shot, it reached thousands of people in hours. I know it’s hard for people to read our stories. I still cry reading them. But people need to see real-life situations. They need to not just hear it or read it; they need to see it. We want to share Marcelina’s story with as many people as we can. It’s something no one understands unless they go through it.

Marcelina may not be here physically, but her legacy lives through me. If I can save one person, that’s enough. If I can get one person to save their health, that’s enough. If getting that flu shot helps one individual or saves one person, it is worth it.

Not just the flu — one family’s story

Jennifer Pool Miller and her family experienced the devastation of influenza firsthand. Five years ago the Millers' youngest daughter, Caroline, spent nearly three weeks in the intensive care unit battling complications from influenza. Several doctors even told the mother of two there was nothing more that could be done for 5-year-old Caroline. Luckily, Caroline survived, and the Millers were spared a fate that some families each year are not.

Read more about the Millers' story, and Jennifer’s work with Families Fighting Flu, in a question-and-answer session featured in the April issue of the Parents PACK newsletter.

Elizabeth’s story

Vira Cover misses her daughter, Elizabeth, who died from influenza when she was only 23 months old. Vira shares her daughter's story because she does not want other parents to experience the pain she feels.

Elizabeth died during a particularly severe influenza season for children, 2003-04, during which 153 families became members of a group they would give anything to be excluded from. Vira realizes that unfortunately each year about 100 families suffer the pain she feels. So she works tirelessly to make sure people know there is a safe vaccine that their children should receive.

Read about Vera's experience in the Immunization Action Coalition's (IAC) "Unprotected People" series.

To read other "Unprotected People Reports," visit IAC's web page.

Remembering a brave boy

By: Freda R. Savana
The Intelligencer, April 4, 2010

(Reprinted with permission of the author, Freda Savana)

Timmy Raymond was a healthy, active boy when the H1N1 virus, fueled by another infection, cut short his young life.

The Christmas tree is still up in the Raymonds' spacious Warrington home. The family had been waiting for Timmy to come home before they took it down. Now, no one really has the strength to do it.

It’s been one month since the quiet, 13-year-old boy died; Bucks County’s only reported death from swine flu. He fought the vicious illness with his usual determination and courage for four months. He survived unfathomable procedures, many used for the first time in medical history, and countless attempts to restore his weakened body. The final effort, a lung transplant, made excruciatingly more complicated because his lungs had dissolved into “mush” and attached to his chest cavity, proved more than he could withstand. Although he lived through the 12-hour surgery, he died a short time later.

“What we did for Tim stretched the bounds of anything ever done at Children’s Hospital of Philadelphia. Many things were done for the first time in the world,” said Dr. Todd Kilbaugh, assistant professor of anesthesia and critical care at CHOP. His case will be included in medical journals and what was learned will benefit others, said the doctor. “Working with our team to try and save Tim’s life was one of the most amazing things I’ve ever been involved with.”

Timmy’s parents, Tina and John, reflect on every detail of their youngest son’s heroic battle – a terrifying and confusing nightmare as he went from the picture of health to life support in 48 hours.

From the Friday before Halloween when he came home from school saying he didn’t feel well, to his last hours, the heart wrenching journey has left the family in awe of their child’s strength, thankful for their unwavering faith and forever grateful to their community.

It began with a fever

The whole family had been sick that week, recalled Tina. Kevin, Timmy’s 15-year-old brother, had flu symptoms, as did she and her husband. As it turned out, all had contracted H1N1, coming in contact with the virus before the vaccine arrived in Bucks. Their eldest son, Brian Harding, 26, escaped the dreaded virus.

“When Timmy said he had a fever after school Friday, it was nothing alarming. I talked to a friend whose son had just had it, and she said, ‘Don’t worry, he’ll be fine.’ Little did I know.”

On Friday night, Tina gave her son a bagel, some soup and Motrin and he went to bed early. By Saturday morning “he looked awful” and said he’d been vomiting all night. He wasn’t the kind of kid to wake his parents though. He had just toughed it out.

She set him up with some ginger ale, a cell phone and the remote and headed out to Kevin’s football game. John was upstairs in bed with the flu, too. When Tina got home, Timmy was already in bed. “He wasn’t that kind of kid,” to head to bed early on a Saturday, said Tina. “I went in and told him to please get me up if he needed me. I can’t imagine how guilty I would feel if I hadn’t said that.”

Sunday morning the world shifted. “Kevin came into my room, he practically ripped the door off, saying Timmy can’t breathe.” Downstairs, Tina found her son “breathing with his whole belly,” she said, taking deep breaths, her arms rising from her sides to explain.

By late morning, the Unami 7th grader was on life support at CHOP, airlifted from Doylestown Hospital. One lung was full of fluid; the other was filling up. Timmy was struggling mightily for every breath. He never left the hospital; he never came off the ECMO (Extra Corporeal Membrane Oxygenation) machine, setting a world record for time on the apparatus that provides oxygenation until lung function has sufficiently recovered. Timmy lived with large tubes chiseled into his neck, giving him the oxygen his lungs could not.

For several days, many of the finest minds in children’s medicine could not understand why Timmy’s condition worsened so precipitously. Why were his young lungs so ravished, so quickly? Why did he keep getting sicker and sicker?

“They kept asking me if he was sick, if anything was wrong with him before and I kept saying no, he just had 15 tackles in his last football game,” said Tina. Then, tests revealed what no one had known, Timmy had MRSA (methicillin-resistant staphylococcus aureus), a bacterial infection highly resistant to antibiotics.

“It was a lethal combination,” said Kilbaugh, of the MRSA fueling the virulent swine flu virus. The infection, acting like igniter fluid, joined forces with the H1N1 virus and carted it through his blood stream.

Tina remembers that Timmy had scraped his ankle on the deck of the family’s pool last summer and the cut refused to heal for some time. She kept attacking it with Neosporin and scolding him for not keeping a bandage on it. The busy summer went on and eventually the cut cleared up.

As the fall approached, the country was preparing a massive inoculation campaign. Across the nation and throughout the region, preparations were underway to help protect people from the flu so many feared. Between November and January, over 70,000 people were vaccinated in Bucks County, said Roxann Bentz, the epidemiology nurse coordinator for the county’s health department. There had already been 2,929 confirmed cases in the state by October of last year, according to the Pennsylvania Department of Health.

A special child

Members of the Raymond family are active in youth sports. John and Tina coach and both boys excelled athletically, playing baseball, football and basketball. Timmy’s infection, called community-associated MRSA, is easily transmitted through high contact sports and his family assumed he contracted it playing one of the games he so enjoyed. The bacteria finds its way into the body through the slightest opening. It can go undetected, lying dormant or appear in a wound.

A calm, hardworking boy, who had just started at Unami Middle School, Timmy was coming into his own as a football player. Mike Clark, one of his coaches, and the father of Timmy’s close friend Ben, described the “notoriously quiet, smart kid” as “always trying his best, never quitting even when things weren’t going his way.” Unlike many young boys, Timmy was a good listener, said Clark. “He wouldn’t jump to conclusions. He never lost his enthusiasm.”

Liz Clark , Mike’s wife, called Timmy “the king of the one-liners,” making her laugh with his quick wit. “He was a super kid and a great friend to my son.” She said Timmy’s death has been very hard on Ben. “He has days where he misses him so much.”

Other children will benefit from the example Timmy set, said Mike Clark. “They watched how hard he worked and how much he grew. He just enjoyed life. We’re really going to miss him.”

Another of Timmy’s coaches who knew him since kindergarten said simply, “he was one of the nicest kids you could ever meet.”

Besides being a fine athlete, Timmy was a straight-A student who played the piano and saxophone. “He was very, very versatile,” said Tina. But rather than boasting of his accomplishments, he was “a humble, quiet kid with tons of friends.” His room at CHOP was “wallpapered with cards.”

Two thousand people attended Timmy’s memorial service, filling Unami’s gym, cafeteria and auditorium.

A community shows its support

In the corner of the Raymond’s dining room there’s an enormous stack of plastic food storage containers. It’s a visible sign of the countless meals friends and strangers alike have brought to help the family over the long winter. “I haven’t made dinner for five months,” said Tina, as the doorbell rang and a woman she’d never met was dropping off a large cardboard box at the front door with the evening meal.

For the Raymonds, the outpouring of support from the community has been nothing less than astounding. Children as young as five shoveled snow and brought the money they earned to the family; others took up a collection the day the local water ice shop opened and still more donated blood. Friends made photo boards of Timmy’s life and hundreds and hundreds of people sent notes and cards expressing their love and sympathy. “I open my mailbox every day holding a box of tissues,” said Tina.

Both John and Tina have heartfelt praise too for the staff at CHOP. Using words like angels and compassionate friends, the couple said the care Timmy received at the hospital was unparalleled. “Through it all,” said John, “the one thing we never questioned was the health care at CHOP. They treated Timmy like he was one of their own.” “They will be in my heart forever,” Tina said.

Faith and saying goodbye

John and Tina share a deep belief in God. That faith, they explained, has sustained them during the loss of their beloved son. A member of the Church of Jesus Christ of Latter Day Saints in Doylestown, Tina said her faith and church have been a “huge” benefit. “I don’t know how people survive something like this without a relationship with God.”

There is comfort, said John, in knowing God has a plan and in knowing everything possible was done to save his son. “Waiting for the lungs was the hardest part,” he said. But once an acceptable donor was found and the decision to try a transplant was made, there was closure. “We knew we had tried everything and would never have to ask, ‘what if’?”

That Timmy did not survive is, of course, devastating to all who knew and loved him. But, his father said, he would have been in and out of the hospital the rest of his life, his quality of life greatly compromised, a spectator to the things he loved. Even with a successful transplant, which is extremely rare, Timmy’s life expectancy would have only been three to five years, John said.

Each night he goes into his son’s bedroom and says goodnight – remembering that Timmy would always go into his parents’ room and give them a goodnight hug and say ‘I love you.’

“You could lose yourself wondering why?” he said. “But God has a plan for all of us and one day you know. Timmy just found out sooner.”

Reviewed by Paul A. Offit, MD on November 03, 2014

Materials in this section are updated as new information and vaccines become available. The Vaccine Education Center staff regularly reviews materials for accuracy.

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