Little Hannah Warren waiting on groundbreaking windpipe transplant surgery
Hannah Warren is approaching her first birthday, but her parents are yet to take her home from Seoul National University Hospital’s neonatal intensive care unit.
Hannah Warren was born with no windpipe and is waiting for a groundbreaking transplant to save her life by helping her to breathe on her own. She was born in Goyang City last August with an extremely rare congenial abnormality known as tracheal agenesis, meaning that her windpipe failed to develop in the womb.
Now her parents are trying to raise $50,000 toward the advanced surgery needed to save her life.
This would involve doctors making Hannah a windpipe, or trachea, in a lab and “covering” it in her own stem cells, a procedure that has never been performed on an infant before.
“When she was born we saw right away something was wrong,” said Hannah’s dad, Darryl Warren. “She wasn’t breathing and she was so blue. The doctors spent about five minutes resuscitating her. It was a miracle they were able to stabilize her. We thought we had lost her.”
With no natural airway, affected newborns can only survive if an alternate pathway for ventilation exists. Luckily, Hannah had developed a fistula which enabled doctors to revive her after birth. The unnatural passageway allows for air to be safely ventilated into her lungs via a tube inserted into her mouth and esophagus.
“It was an absolute miracle. If she hadn’t developed that in the womb she wouldn’t be here today.” said Warren, who first came to Korea from Canada in 2001, and now lives Hwajeong-Dong, Goyang City. The private English teacher married his Korean wife Young-mi three years ago with whom he has another daughter; two-year-old Dana.
He added: “Hannah is very active and aware. She is doing incredibly well, but she needs a trachea or she will die.”
Hannah’s new trachea will be made at the University College in London, England. Once a bioengineered synthetic scaffold is made, stem cells from Hannah’s bone marrow will be seeded onto it. Using Hannah’s own cells will minimize the chance of her immune system rejecting the transplant because the transplanted trachea will exactly match her DNA. If all goes well the new windpipe should grow with Hannah as she does. This life-saving surgery aims to enable her to breathe normally and live a long and healthy life.
Italian surgeon Dr. Paolo Macchiarini and American surgeon Dr. Mark Holterman are hoping to perform the transplant at the Peoria Children’s Hospital in Illinois this August.
But before the Christian-run charity hospital in Illinois can host the stem cell-using operation, the procedure must first be passed by the national U.S. Food and Drug Administration as well as the Illinois state regulatory body.
If the approval is not gained, Darryl and Young-mi intend to fly to Sweden to have the surgery carried out at a hospital in Stockholm at a much higher cost. The operation there would cost $200,000.
“This stem cell transplant is groundbreaking, but the attending surgeon is an American and he says it is mostly a formality,” he said. “We do not know how much the treatment would cost in America but, partly because this is a charity-run hospital, it would be a fraction of what it would cost in Sweden.
“We have insurance for her here in Korea which has been quite fortunate but if we go to Stockholm our insurance won’t cover that. The majority of the cost would go to pay for her stay in the intensive care unit if everything goes well with her transplant. We will find out in the next week or so if it is possible to go to the U.S. We are just waiting for the message but we hope that we can get the surgery in August.”
The family has raised more than $11,000 on the Give Forward fund-raising website, 25 percent of which has come from people the family does not know.
“Hannah is a very strong, brave and special little girl who deserves this amazing opportunity,” said Darryl.
“For ten long and painful months Young-mi and I have dreamed about finally getting Hannah home and watching while our two little girls play happily together. It’s these types of dreams that keep us focused and driven to give Hannah her transplant.”
Anyone wishing to donate can go to the fundraising site www.giveforward.com/helphannahbreathe or send a check made out to Genevieve Warren to 8 Gregg Avenue, Paradise, NL, Canada, A1L 1L4.
By Kirsty Taylor (email@example.com