Toddler will soon get high-tech trachea

Steve
Steve Bartlett
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Family plans to move to Newfoundland, post-transplant

Hannah Warren is getting stronger and ready for an upcoming trachea transplant. - Submitted photo

Hannah is learning to walk and crawl simultaneously in the South Korean neonatal ICU that's always been her home, with feeding and breathing tubes attached.

If things go as expected, she'll leave for a U.S. hospital soon, and after surgery there, will finally live free of the tubes that have been attached to her since birth.

"Her spirit is super high, and she's super strong," says her father, Darryl Warren, a Paradise native who moved to Korea to teach English 10 years ago.

As The Telegram first reported in July, Hannah's trachea didn't develop in the womb. Tubes have kept her alive since she was born in August 2010, but she needs a bio-engineered transplant to survive.

Now, 10 months later, things are almost in place for the trachea transplant at a hospital in Peoria, Ill.

It's taking that long to get U.S. regulatory approvals and an Italian surgeon's paperwork in order. (That specialist and an American will perform the procedure.)

Warren hopes Hannah's operation will take place late next month or in early July.

The waiting, and having an infant in hospital for so long, has been challenging for the family, which includes Warren's Korean wife, Young-Mi, and their four-year-old daughter, Dana.

He says he's been living three lives - at home, at work and at the hospital.

"It's difficult to describe," he says. "It feels like you are wearing a helmet for two years, and you can't wait to take it off."

Hannah will receive a synthetic trachea the size of a 12-year-old girl's.

It will have the capacity to grow by 20 or 30 per cent, which will, hopefully, handle Hannah's growth spurts.

The trachea can also be widened in the future, if necessary.

Warren says he and his wife can't wait to bring home a healthy child, an experience they enjoyed with their oldest.

"It's going to be an incredible relief, and the happiness is going to be extraordinary. We can't wait," he says.

Long-distance love

Warren's mother, Jennie, is anxious, too.

It's been an ordeal for her, having to offer love and support from across the planet in Paradise.

"We're very excited," Jennie says. "We can't wait to get this done. ... God love her, she's a real trouper."

And where the Warrens plan to live after the surgery is especially special for Jennie.

It's expected she'll have to remain in the States for a month after the operation, but once she's able to travel, the family is flying to Newfoundland and settling here for good.

"I don't know how we're going to deal with it all," admits Warren, who hopes to teach in his home province. "One step at a time, I guess."

The support of his family and friends will help, and he says he is already grateful and overwhelmed by their backing, and by the generosity of strangers.

People at home and in Korea have participated in fundraisers and donated to giveforward.com/helphannahbreathe, contributing roughly $100,000 and making Hannah's transplant possible.

Warren says they're short of their target, and donations are still welcome, but the total has reached a point where it's not a constant worry. (The operation could cost as much as $300,000.)

He is floored by how much people from here have given, especially when he's been living so far away.

"It's just heartwarming. And it gives you some serious humility and love for my home province, and I just can't wait to get back and thank people for what they've done for us. It's been incredible. Absolutely incredible."

Warren says watching Hannah get stronger and ready for the surgery has been amazing.

"It's a special time, actually," he says.

sbartlett@thetelegram.com Twitter: @SteveBartlett_

Organizations: Hannah's, U.S. hospital, The Telegram

Geographic location: Newfoundland, Paradise, Korea Peoria, Ill. U.S.

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Recent comments

  • Jessica Campbell
    May 20, 2012 - 21:22

    Hi, My name is Jessica Campbell. 3 months ago I gave birth to twin boys, one of which has Tracheal Atresia. The same diagnosis as Hannah. Up until now we thought our son was the only one living with it. He is not doing well right now and doctors do not know what to do to stabilize him until he is big enough to have the stem cell trachea transplant. I wonder if you might have any contact information for Hannah, 'S parents and doctors in South Korea. I am sure our doctors would love to speak to them if they are comfortable speaking to them. I am a desperate parent looking for anything and everything to save my son's life and the lives of others that are born with Tracheal Atresia in the future. Thank you, Jessica Campbell

    • timm
      March 27, 2013 - 10:54

      Jessica, I would love to see what we can do to help you and your son! Feel free to reach me at timm(AT)nanofibersolutions.com Timm