Paradise grandparents anxious as granddaughter in Korea awaits rare trachea transplant
Jennie and Tom Warren of Paradise hold a picture of their granddaughter, Hannah, whose trachea failed to develop. — Photo by Steve Bartlett/The Telegram
Jennie Warren has never met her granddaughter Hannah, but the 10-month-old is always on her mind.
“I can’t focus. I can’t focus on anything,” the Paradise woman says.
“I know I shouldn’t focus on her so much because I have family here, two grandkids here. But I’m the type, if I’ve got something on my mind, it’s hard for me to not think about her. I go to bed thinking about her and wake up thinking about her.”
Hannah is 10,000-plus kilometres away in Korea. Warren’s son, Darryl, moved there to teach English in 2002. He fell in love and married a Korean woman, Young-Mi. They started a family. Hannah is their second daughter, a sister to two-year-old Dana.
The reason for Warren’s worry and preoccupation with Hannah — the infant’s trachea failed to develop during gestation.
It’s a rare occurrence, and afflicted babies only survive if there’s alternative ventilation.
Born last Aug. 22, Hannah wasn’t expected to live 48 hours.
“That was devastating to say the least. We were so heartbroken,” Warren says.
Miraculously, Hannah developed a fistula — basically a small hole — between her bronchus and oesophagus shortly after birth. That enabled doctors to resuscitate her by pumping air into her lungs via a tube.
Once stable, she was transferred to a hospital in Seoul, where she’s been in neonatal intensive care ever since.
“She’s a very lucky little girl. She’s meant to be alive,” says Warren.
Besides being hooked up to a ventilator, Hannah has had a feeding tube since birth.
With so much tubing around her, the child’s hands are restrained most of the time so she doesn’t pull anything out.
Despite her predicament, Warren says Hannah is very strong and “doing remarkably well.”
But that will change. Without a trachea, she’ll eventually die.
To keep her alive, two surgeons — an Italian and an American — are planning to perform a transplant.
The procedure will involve an artificial trachea bio-engineered at a laboratory in London, England.
Stem cells from Hannah’s bone marrow will be incorporated into it, minimizing the chance of her immune system rejecting it.
“This procedure has been done before, but not with anyone so young as her,” Warren says.
Where it’ll take place hasn’t been determined.
Hannah’s parents are waiting on approval from some U.S. agencies. If they get it, she’ll get her high-tech trachea at Peoria Children’s Hospital in Illinois.
If not, she’ll have the procedure in Stockholm, where the Italian specialist works.
Word from the U.S. authorities is expected within a week or so, and the family is confident.
The operation will come with a hefty price tag wherever it happens.
The cost of doing it in the U.S. is unknown. It would be the first time such a transplant has been done at the Illinois hospital and Hannah’s response to it has to be factored in.
Having the procedure in Sweden would run around $200,000. The price has been determined as the Italian doctor has done previous tracheal transplants there.
To tackle the big bill that’s coming, Warren’s son recently launched “Help Hannah Breathe,” the on-line fund-raising campaign found at: www.giveforward.com/helphannahbreathe.
The goal is to generate $50,000, with all money going towards Hannah’s medical bills.
As of 10 a.m. Friday, almost $14,500 had been raised.
As nerve wracking as this has been, Warren and the family are buoyed by the support.
Donations are coming from around the world and people here are stepping up, too.
Friends and family are giving, and strangers are dropping off cheques.
People are also organizing events to help Hannah, like the fundraiser at the Brimstone Public House on George Street tonight and the bake sales and bingo being planned at McAuley Convent, where Warren works.
“It’s hard to believe this is happening, but we have the support,” she says.
Warren talks to her son on the phone twice a week and communicates with him via email.
It’s been tough not to be closer, but she feels she would have been an added burden on him if she had travelled to Korea.
Darryl and Young-Mi spend their free time at the hospital and Warren wouldn’t want to take their focus off Hannah or Dana.
But whenever and wherever Hannah gets her new trachea, she and husband Tom plan on being there to lend their support.
It’ll be a unique first meeting between grandchild and grandparents, but one the couple are anxious to have happen.
“We’re just waiting for the word,” Warren says.