St. Louis-area toddler with rare lung condition gets transplant, - KMOV.com

St. Louis-area toddler with rare lung condition gets transplant, hope

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ST. LOUIS, Mo. (KMOV.com) -- Few things in life are more peaceful than a sleeping child, their little lungs inhale life and exhale hope.

The hope for 19-month-old Elias Kosednar is to one day trade short, shallow puffs for deep, distinguished gulps of air.     

"He's struggled to take a breath every day of his life. Once he gets new, healthy lungs, he's going to take that first breath and his eyes are going to open up like ‘oh, this is what this is supposed to be like. This is how I'm supposed to sit there and breathe,'" said Elias' father, Paul Kosednar.

That dream brought the Kosednars to St. Louis Children’s Hospital.

"Eli is a very unique patient. He has developed a problem where the blood flows through his lungs abnormally and does not pick up oxygen the way yours or mine would pick up oxygen. The blood flows through his lungs, but essentially stays blue and when you look at him, he's very blue." said Dr. Stuart Sweet.

Doctors diagnosed Elias with Pulmonary Arteriovenous Malformation.  A condition that may have quietly killed him just weeks after birth if not for mother’s intuition.

“The night before I noticed he was having trouble nursing. I said he looks really blue right here. I thought he bruised himself or something. She put a pulseox on his finger which measures the count of your blood. The machine popped on at 62. They thought the machine was broken. After three machines, we figured out it wasn't the machine and we were on a ride to Cardinal Glennon," said Elias' mom, Kim Kosednar.

Nearly two years since that fateful day, the origin of the disease remains a mystery.

"We've done every DNA test, every biopsy and blood test that medical science currently has and they still don't have answers." said Paul Kosednar.

"He's having difficulty growing and developing and lung transplant is really the only alternative for him unfortunately," said Dr. Sweet.

The path to a lung transplant can be fraught with frustration and fear.  There is also a harsh realization: For Elias to live, another child must die.

"We're really dependent on a child of similar age going through death in a way that they can donate lungs. The lungs have to be healthy enough to sustain the process of coming from someone who's died and gone through an operation to go into a child that's very sick." said Dr. Sweet.

 When a match is found the Kosednar family will get a call. They'll have an hour to get to the hospital.

To prepare for that scenario, Kim took a sabbatical from her teaching job. With an $800,000 medical bill on the horizon, finances are tight and fundraising is a necessity.

Friends and family are chipping in at every turn, and the Kosednar's are receiving help from Children's Organ Transplant Association.

"Our goal for him is to try and give him a normal childhood at least for a while and see where it goes. If it's meant to be it'll work. If it doesn't, it doesn't. There has to be more to his life than just this," said Kim Kosednar.

On July 30, the Kosednar's phone rang. The family learned Elias' new lungs were on their way to the hospital, and Elias was on his way too.

"There's a frantic feeling. Excitement. You want to run around and make sure you've got everything even though you've been preparing for months. The only feeling you can compare it to is when you got the call that my wife was in labor and we were going to have a baby," said Paul Kosednar.

After months of racing against time to make it to this day, the Kosednar's raced to the hospital. Elias entered surgery just before 2:00 a.m. As Paul and Kim sat in the waiting room, the clock once again was their enemy.

"We were the only two in there. You have a lot of time with your thoughts to contemplate different scenarios," said Paul Kosednar

Meanwhile, in the operating room, a successful transplant was the only scenario doctors had in mind. When the 10 hour procedure was finished, it didn't take long for everyone to see this brave little boy in a whole new light.

"When we first saw him the first thing we looked at was the bottoms of his feet. They were bright pink! You knew immediately the reaction from both me, my wife, doctors and nurses. Look at how pink he is. The color change was that reaction," said Paul Kosendar.

 Their joy tempered with sorrow.

"For this to happen, some other family had to lose their child. They had the worst day of their life so we could potentially have the best day of ours," added Paul Kosednar.

A selfless act and gracious gift in the face of tragedy.

"There's thousands and thousands of people out there that wouldn't be here without those gifts. Hopefully there will be more and more and as medicine improves, more success stories like this," said Paul Kosednar

"My recommendation to any parent that is listening is to think that through now so that when that terrible tragedy comes, if it's going to come to you, you know what you want to do for your child," added Dr. Sweet.

These days, Elias and his family are inhaling life and exhaling hope in ways they never have. A period of peace that for all involved is a breath of fresh air.

To help Elias and his family, click here. For information on children who are in need of a transplant, click here. To help adults in need of an organ transplant, click here. To help with organ donation in the Midwest, click here.

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