Touch of an Angel
West Linn family comes to the aid of Peruvian girl needing surgery
It's the kind of authentic laughter that permeates from deep inside the belly. The giggles are loud enough to stand alone, but the culprit stands just more than three feet tall.
West Linn resident Mitch Brock's house hasn't been this loud in years. His three kids are relatively grown - ages 9, 11 and 13 - and during the day he and his wife Karoline are at work at Kaiser Sunnyside Medical Center where he's an ear, nose and throat surgeon, and she's a pediatrician tending to newborns.
But for the past three weeks their home has reverted into a land for noisy games and a whole lot of Spanish flash cards.
While volunteering at a clinic in Coya, Peru with Northwest Medical Teams a year ago, Brock met a 6-year-old girl in need of medical attention. Last week the little girl received the surgery she needed in Oregon and formed friendships with a family a world away.
Hiding the mass
At first glance, Jomira Huaman appears just like any other child - she's outgoing, upbeat and intelligent. She already spoke Spanish, Quechua and is learning English. But thick locks of shiny black hair hid a lifelong health threat.
A more than 3-inch-diameter squishy bump protruded out the back of her head. Jomira perfected hairstyles to hide the mass. She slept on her side and was used to headaches.
The bump is a protrusion of spinal fluid surrounding her brain in the meninges. The meninges are membranes that cover and protect the brain, cranial nerves and the spinal cord. An area of Jomira's skull didn't close properly when she was a fetus, making an avenue for the spinal fluid to seep through and form a bump out a hole in the back of her skull.
'Imagine that the brain floats in a big water balloon. You've got this water balloon and you want the balloon to stay contained in the skull. As you continue to fill up the balloon with more and more pressure, the bag is extruding through the hole (in the skull and) under the skin - getting bigger and bigger,' said Monica Wehby, Jomira's pediatric neurosurgeon at Legacy Emmanuel Children's Hospital in Portland. 'Basically, you've got a piece of water balloon that's expanding.'
As Jomira grew up in Peru, so did her bump. Her brain is in tact and she otherwise developed normally. Blood vessels and drainage veins developed abnormally in her brain but her body compensated for this and she functions normally, said Wehby.
Her bump - a meningoencephalocele - affected day- to-day life patterns out of fear of head trauma, which could have been fatal, said Wehby.
'It's like walking around with a hole in your head,' said Wehby. 'You're missing that God-given helmet.'
Jomira referred to the mass as her 'little head' - a part of her that had taken on a life of its own. Her 'little head' was what led her to the Kausay Wasi Health Clinic in Coya, Peru in October of 2005. That's where she was one of dozens of patients that Brock saw while volunteering with Northwest Medical Teams, which helped construct the clinic.
The Kausay Wasi Health Clinic serves 60,000 to 80,000 people - mostly indigenous - of the Incas' Sacred Valley. Mud adobe dwellings with dirt floors and no running water blend with other houses, some with plumbing and elecricity. Some people use outhouses. Some people have cell phones, said Brock.
The clinic staffs less than 10 medical professionals. Jomira's parents and siblings live about 15 minutes away in Calca, Peru in similar poor conditions. A clinic visit costs less than a dollar, but no one is turned away. There are no facilities in Peru to adequately handle Jomira's problem, said Brock.
'I took a picture of her not really knowing what to do,' he said. 'We knew we'd have to arrange for her to go somewhere.'
Healing the Children
Back in Oregon, Brock showed Monica Wehby Jomira's pictures. Wehby is a longtime friend and former classmate in medical school. Steps toward Jomira's surgery evolved from there.
Wehby suggested support for Jomira through Healing the Children, a non-profit organization that facilitates efforts for children in need to receive medical care. Wehby performs two or three surgeries a year for children through the organization.
Based in Spokane, Wa., Healing the Children chapters are located nationwide and bring children to cities and medical professionals that donate their services; Legacy Emmanuel Children's Hospital allocates funds each year for surgeries of this type, she said. Children stay with host families for the duration of their stay in the United States while receiving care.
To speed up the process of looking for a host family for Jomira, Brock volunteered his West Linn home. Eleven months later - on Oct. 31 - Jomira and Rocio Roman-Alvarez, a Kausay Wasi Health Clinic employee and friend of Jomira's family, arrived for the surgery to repair Jomira's deformity. American Airlines donated their plane tickets.
A few years back, Roman-Alvarez lived in Portland and was familiar with the area and knew Brock from his volunteer trips. While in Oregon, Roman-Alvarez was Jomira's translator.
When asked what Jomira was looking forward to on this trip she told Rocio, who translated, 'I want someone to take care of my little head.'
Jomira said the surgery will make her happier.
'I'm going to be able to paint, go to school and go out with Rocio,' said Jomira. 'It's going to feel much better.'
On Nov. 8 Jomira underwent surgery to repair the defect in her skull. Wehby cut off the excess spinal fluid sac - 'the water balloon' - protruding through Jomira's skull.
'Then I basically patched the water balloon like patching an inner tube,' said Wehby.
Using a dural graft, Wehby mended the spinal fluid sac.
Areas of Jomira's skull near the hole were of different densities due to erosion over time as the bump grew. Thin areas of bone were filled in using a bone cement, similar to putty. Her skull was filed down where it was too thick. A titanium plate now covers the hole in her skull, overlaid with bone matrix. The area was drilled down and ridges were smoothed so Jomira's head will feel normal to the touch. No hair was shaved during the procedure.
Titanium was chosen because Wehby will most likely not see Jomira again. If she had lived in the United States she said she probably would have chosen a plate that dissolves into a normal skull over time. But with those, sometimes more surgeries are required, she said.
'Titanium isn't going anywhere. It will be stable and safe,' said Wehby.
By the ages of 6, 7 and 8, a majority of a child's skull growth is completed, she said.
'That's why kid's heads are so big,' said Wehby.
Jomira spent four days at Legacy Emanuel Children's Hospital - Nov. 8 to 11 - before returning to West Linn at the Brock's home. The only way to inform Jomira's parents back in Peru of the outcome of the surgery was through e-mail to the clinic. If they stopped by the clinic, they could find out how she's doing. They do not have mail, a phone or e-mail.
Brock e-mailed her family that she is 'healing beautifully' last week.
A big smile
Back at the Brock's house, Jomira - now with a bandage around her head - runs about the living room and kitchen with Rachel, 13, Brock's oldest child. The girls count to 10 in Spanish and fit together pieces to an oversized puzzle on the floor.
Rachel picks her up and carries her like a small doll over to Brock on the couch.
'Watch this,' Brock said.
He laughs and wiggles his hands on her back. Jomira's smile swallows her face.
'She has a neat little laugh. She's really ticklish,' said Brock. 'She just giggles and it's the most wonderful laugh.'
Brock said he hopes that Jomira's surgery inspires other families to become involved with Healing the Children as foster parents for children receiving treatment.
Since the opening of Kausay Wasi Health Clinic in Peru in May of 2005, 11,500 patients have been seen, 400 surgeries have been performed and 4,000 pairs of eye glasses have been distributed, according to Brenda Porter, International Team Coordinator with Northwest Medical Teams for Latin America who has worked alongside Brock on several trips to Peru.
'The staff at the (Kausay Wasi) clinic always learns from Brock and he's willing to share his knowledge,' said Porter. 'He's just a very humble volunteer.'
And he has a new special friend.
'(Jomira) can now climb trees, run and play with her friends and not have to constantly be told to be careful,' said Brock. 'She's just a little ball of fire. She's very courageous.'
Jomira can now put pressure on the back of her head.
'I hope that Jomira goes home and will live a very healthy life,' said Rebecca Snyders, executive director with Healing the Children's Oregon and Western Washington chapter. 'And will never have to suffer pain or worry about her future, because now she'll have a future.'
Brock said he plans to visit Jomira each fall when he visits Peru. He said he is excited to 'watch her grow up.'
Jomira and Roman-Alvarez will probably return to Peru next week. Brock said that having Jormira at home in West Linn for the Thanksgiving meal will add a new dimension to the family's holiday.
'We'll probably add some Peruvian cuisine to the meal this year,' said Brock. 'This whole (effort to help Jomira) is just an amazing sequence of events. It seems like several twists of fate. It's like it was meant to happen.'
For information about Healing the Children, visit the Web site at www.healingthechildren.org.