ARDS
Kids Stories

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The stories will be edited for length so that we can include as many as possible.

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(In Alphabetical Order)

Nathaniel Adamczyk
Dewang Chopra
James Graham
Mary Griggs
Jacob Irwin
Jackson
Jessica
Kim
Zoe Erin Lambert
Julie Russell
Saleena
Courtney Shelstad
Jacob Stewart
Joshua Weaver

Jacob Irwin, the World is a Poorer Place...

Photo of Jacob On November 22, 2006, ten year old Jacob landed on his head after falling off a horse. He fell when the saddle broke and landed head first on a concrete septic tank lid. He was life-flighted to the hospital. Jacob dealt with many medical concerns including brain swelling, damaged kidneys, fluid build up, pulmonary edema, infections before the ARDS was diagnosed. On the third day of his hospitalization, his family was told that he had pneumonia. On the fifth day, they learned he had ARDS.

Jacob had been on a regular ventilator at 100% oxygen for about the first three weeks and then was placed on a high pressure ventilator and nitric oxide until the end. Jacob's kidneys had stopped putting out urine and filtering correctly, so doctors put him on dialysis to clean his blood and drain the excess fluid in his body.

For the last week, he was still urinating somewhat, all his numbers were strong and then suddenly, Jacob crashed. His doctors brought him back but then, two hours later, Jacob died. Doctors said that his organs failed to get sufficient oxygen.

Though Jacob fought incredibly hard to beat all of those medical challenges he faced, he lost his battle with ARDS on December 26, 2006.

Carolyn, his mother, said that she had never heard of ARDS before Jacob was diagnosed. She said that she has known several people who lost a child but never thought it would happen to their family and states: "My heart breaks for those that have lost someone, especially their child and especially someone at the hands of ARDS; it is such a horrible thing to go through and watch - helplessly".

Carolyn created a website for Jacob soon after he was diagnosed. Please visit Jacob's site at wwww.caringbridge.org/visit/jacobirwin
and to view photos of Jacob in crisis, click here: Photos of Jacob

Saleena, the smallest miracle. Contact: Grandmother Linda Silva

Photo of Saleena Saleena was born almost a month early on October 20, 2002. She was born by Cesarean birth and weighed only five pounds.

Saleena initially had some difficulty breathing and was sent to the special nursery. At one week old, Saleena was able to go home. But only one week later, Saleena developed RSV. She was on full oxygen within 24 hours and needed to be ventilated. Saleena was flown to Mass General in Boston.. She spent over four months on the ventilator at the PICU. She was surrounded by her lvoing family. Saleena's gandmother, Linda, is an ARDS survivor.) Read Linda's ARDS Story

X-rays were taken daily. The doctor's looked extremely concerned. Linda's daughter had watched her mother endure her hospitalization and now she had to watch her daughter fighting ARDS.

The family had weekly meetings and doctors were not always encouraging. But Saleena was a fighter and with the love and support of those who surrounded her, she persevered. Still, Saleena developed blood clots and she required blood transfusions.

The first time the family was able to hold Saleena was the week of Christmas. But soon thereafter, she developed another infection. Finally Saleena turned the corner; she was on the rode to recovery. She came off the vent just before doctors were going to trach her.

Saleena spent almost a month at rehab. Every little accomplishment she made was a celebration. She required much treatment and support, that family learned to administer. She needed breathing treatments several times a day. At five months, she only weighed about eight pounds.. It was a tough, uphill battle but somehow she still was able to smile..

After about six months, she no longer needed oxygen. However, Saleena developed a rare blood disorder called Cyclic neutropenia where her white blood count fall every 20 days or so. If she acquires an infection at the time her blood count is low, she gets seriously ill. Though she has had many setbacks with numerous hospitalization, she has been pretty stable for about a year now. She has had some speech delay and some learning delays but nothing too extreme. Last year she had genetic test done and was told she will out grow her blood disorder.

In June 2007, she performed in her first dance recital. Her family truly feels blessed with another miracle.

ARDS Survivor: Kim Contact Kim's Mother, Laurie

In the middle of June, 2006, 17-year old Kim was diagnosed with pneumonia, sent home on antibiotics, and twelve hours later, had difficulty breathing. Kim's mom, Laurie, brought her to the local emergency room where she was told that her condition was worsening; Kim was sent to the pediatric unit at Mary Imogene Bassett Hospital in Cooperstown, NY. That night was awful for Kim and she was put on a vent; the next day, Kim was transfered to Albany Medical Center. Kim was ultimately diagnosed with bilateral pneumonia, sepsis and ARDS. Her condition deteriorated so quickly, even before her parents could process all that was happening, Kim was fighting for her life.

As the days passed, Kim continued to decline. Her chest x-rays showed a complete white out in both lungs and fluid building up on the outside of her lungs. Doctors has difficulty keeping her blood pressure up; Kim required a blood transfusion. Kim's friends from school came to visit and were in disbelief that their beautiful friend was dying before their eyes. Kim had always been healthy. She was the captain of the girls varsity softball team and played on the tennis team as well. Many prayed for Kim. A friend, who was a Reiki Master come to do Reiki (healing energy) on Kim a few times.
Eventually, Kim began to improve when she was flipped on her stomach-twenty three hours on her stomach and one hour on her back.
Fluid was removed from around her lungs. Kim spent about two weeks on a vent and in a coma.

Finally, Kim the vent was gone and Kim came home two and a half weeks after she arrived. She did not need oxygen at home. Three days a week, Kim went to the hospital for physical and occupational therapy and she rapidly improved. Initially, Kim had bad pains in her head, joint pains, difficulty sleeping, some confusion and memory loss and numb spots on an arm due to IVs.

Kim reported experiencing horrific nightmares while in the coma to the point of requiring reassurance that the dreams were not real. She reported a few out of body experiences as well as meeting relatives who had been deceased for a long time. After being home a couple of weeks, Kim's hair began to fall out, estimating about half fell out.

Kim spent the summer in PT and OT and returned to school for her senior year, earning the number 1 singles spot on her varsity tennis team and was chosen Captain of the varsity softball team. That fall, Kim was elected homecoming queen and everything began to fall back into place.
Kim is now a freshman in college in New York, playing tennis on her college team. Though she does occassionally suffer chest pressure and pain, she is doing amazing! Kim is a fighter and believes that her love for sports helped in her recovery. She was determined to play tennis and softball again and today, that is just what she is doing.

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Dewang- New Twinkling Star

Dewang Chopra was born on June 26, 2000 in the satellite city of Faridabad, near New Delhi, India. Dewang proceeded his twin sister, Disha, by five minutes. Dewang was an excellent student and athlete, excelling at Badminton, and very fond of cycling and skating. Dewang never suffered any serious health problems.

In August, 2008, he got mild fever; treatment was provided but the fever continued. A local doctor suggested that his parents bring him to a better hospital in New Delhi for additional tests. Dewang went to the best hospital, Sir Ganga Ram Hospital, where physicians advised additional tests but they results were normal.

However his oxygen continued to increase rapidly and his CT scan for his chest revealed a left lower lobe collapse and consolidation with right lower lung involved also. Dewang’s respiratory distress worsened and he developed hypoxemia and hypercapnia. Dewang was put on a ventilator.

Ventilator requirements started increasing with high PEEP and PIP, he was given various combinations of antibiotics including Anti Fungus, ATK and steroids but his condition did not improve. Because of high pressure of ventilators he had developed air leaking in the form of pneumothorax and had three chest tubes inserted; at that point, his body began to swell. He developed pancytopenia in the form of markedly depresses TLC required G-CSF, anemia requiring blood transfusion and thrombocytopenia requiring platelet support.

However his all other major organs like heart, kidneys and liver were functioning well even after 35 days on ventilator, with no other infection caused by ICU treatment. However Dewang showed no improvement in his lung condition even in spite of increasing the ventilator settings

After swinging between death and life for five weeks on ventilator with very low SPO2 levels many times, Dewang’s sweet story was coming to an end on the morning of October 19, 2008. His sad, helpless, mother with tears in the eyes, read Indian Holy Book Geeta in front of her dying son. Though Dewang’s parents were willing to donate his organs to help others in need, doctors advised that due to his medical condition and infections, it would not be the best scenario for those who would receive such organs. His loving and devoted parents not only regretted that they were unable to save their dying child but could not help another child in need with his organs. To be sure, Dewang’s parents say that it is truly on of the most difficult things to see one’s child dying slowly in front of you and being completely unable to provide any help.

But Dewang’s father wants to do something in honor of his son’s memory. His first step is to share the remarkable story of a wonderful boy’s life ended much too soon. Beyond that, he plans to help to educate people and those in the medical community about this syndrome that took his son too quickly and suddenly. The world is a poorer place….

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If you would like add your ARDS Kid's story, please email us at . The stories will be edited for length so that we can include as many as possible.

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ARDS Foundation
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Northbrook, IL 60062
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Eileen Rubin Zacharias, President
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The ARDS Foundation

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ARDS Kids Stories

ARDS
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