Family flies deaf child to Italy for surgery not approved in US
February 19, 2013
By Ellysa Gonzalez
Lubbock Avalanche-Journal
LUBBOCK — From an onlooker’s perspective, Anna Burch is like any other 5-year-old.
She’s friendly, energized and quite interactive. But if you call her name, she won’t respond.
She’s not being rude. She simply can’t hear you.
Amy Burch is a single mother of three adopted girls — Amelia, 8; Lucy, 3; and Anna, 5. Burch adopted Anna from Anyang, China, just a few weeks before her fifth birthday with the help of her parents.
Debra Burch, Amy’s mother, said she and her husband Mike were with her daughter when she made the decision to adopt Anna.
“We knew she was deaf,” said Debra.
The disability didn’t hinder the family’s excitement to adopt her and figured Anna’s deafness could be treated with a hearing aid or cochlear implant.
The extent of Anna’s condition was unknown until the family had her hearing assessed.
Anna was born with no cochleas, said Dr. Steven Zunpancic, assistant professor of Speech-Language & Hearing Sciences at Texas Tech University Health Sciences Center School of Allied Health Sciences.
The cochlea is what allows hearing, said Brittany Hall, clinical supervisor for SLHS at TTUHSC SAHS.
Anna was profoundly deaf. Debra said cochlear implants and hearing aids would be of no use, so the family began looking into other options.
Less than a month after Anna’s arrival, the Burch family arranged for Hall to begin working with Anna.
She was taken to Hall for an assessment in August.
“Anna is such an amazing little girl,” Hall said. “She has no formal language of communication, but she is such a communicative little girl. … I saw her for an assessment in 2012. She was communicating, but it wasn’t through words. With the help of the family, she learned sign communication.”
Hall said before Anna’s departure to Verona, she was working to teach her Anna to pair signs with speech by reading lips.
“She can look at my face and lips and tell the difference between two phrases,” she said. “Pair that meaning with a sign. Gain meaning from reading somebody’s lips. Also help understand, move her mouth and make sounds. She can’t hear what she’s saying, though.”
Debra said an option presented itself and set in motion almost two weeks ago in the form of Auditory Brainstem Implant surgery.
The surgery is legal for adults in the U.S., but not for children, Zupancic said.
On Jan. 22, the Federal Food and Drug Administration approved a trial for children 24 months to 60 months.
The trial is sponsored by the Los Angeles-based House Research Institute and Children’s Hospital Los Angeles and Dr. Vittorio Colletti of the University of Verona Hospital in Italy.
Upon learning of the trial, the Burch family tried to get Anna involved, but failed, Debra said. She said they contacted a doctor at the House Research Institute who said Anna missed qualification requirements by a few months. The disappointment was inevitable.
About 24 hours later, things began turning around for the Burch family. Dr. Colletti called and asked if they could “bring her in next week” so Anna could begin her journey to hear.
Debra said the family accepted immediately. They were grateful for the opportunity, even on such short notice. She said Dr. Colletti explained he likes to perform the surgeries on children all at once. She said the next time an availability came up could be months from now.
“I think it’s good this way because we don’t have time to be afraid,” Debra said. “We think she’s going to win the world over. If there’s something out there that will help her, we have to do it.”
Hall said the surgery involves an implantation of a device that will transmit signals to Anna’s brainstem.
A successful surgery means Anna would be able to process auditory signals, Zupancic said.
“We just don’t know how much or the quality,” he said.
The expense of the trip, which includes a six-week stay at the hospital for Anna and rental of an apartment for Amy and her father, is calculated at $88,000, Debra said.
Debra said the family put the situation in God’s hands.
She said Amy was speaking to a lady from London in a chat room one evening when she donated $9,000 left over from her own child’s surgery for Anna’s. The stranger told Amy her child had had the ABI surgery and was doing well. She mentioned a visit to Dr. Colletti for a checkup during the time Anna would be in Verona. Debra said the money was paid directly to the hospital.
The family also has an account for donations set up at First Convenience Bank inside Walmart locations called “So Anna Can Hear.”
“We have prayer chains all over the world for her,” Debra said. “We’re missionaries. We have a campaign called ‘So Anna Can Hear.’ ”
Mike, Amy and Anna departed to Verona on Thursday.
Debra said Anna is scheduled to have surgery on Monday.
“They want her in the hospital a week ahead so they can quarantine her since it is a brain surgery,” she said.
On Saturday, Anna met Dr. Colletti for the first time. Colletti has performed ABI surgery on kids in Italy, where it is approved. Debra said doctors from the House Research Institute will be present at Anna’s surgery to learn from Dr. Colletti.
Amy’s blog post from Saturday reads “Anna took to him immediately.”
After the initial meeting, Amy sat down with Dr. Colletti to discuss the surgery.
She wrote: “He was very blunt and honest about the horrible things that could happen in brainstem surgery. I knew all of this from my research, but still, hearing him say it made my heart quiver. I started to tear up and then he took my face in his hands and said, ‘Now ask me in how many of my patients any of those things has happened.’ So I asked. He said, ‘Zero. None.’ ”
Amy’s latest update was posted Monday afternoon.
It reads: “Tomorrow, Anna checks into the hospital. Pray for us! Anna is not used to being confined in a small space (her precious teacher asked us, ‘what on earth will she do all those days?’), and pray for us as we get used to the medical ways in another country. It is sure to be different! Pray that we can be a blessing to the other families whose children are also undergoing ABI. Pray for the financial details to work out. It’s a stretch for us to even be here, so just pray things will work out.
“Most of all, we plead with you to pray for protection for Anna and for healing. Our heart’s desire is that this surgery will be more successful than anyone thinks possible and that Anna will shock the socks off everyone. Yes, I am praying for more than I would dare to ever ask, hope, or imagine. Would you join me?”
Anna Burch
* Money can be donated to Anna’s medical expenses at any First Convenience Bank locations. Ask to donate to “So Anna Can Hear.”
* To keep up with Anna’s progress, check out Amy’s blog at morethanaskedorimagined.blogspot.com.
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