Children’s Hospital International Services

Maria Jose de Gallardo, the program director for Guatemala at The Shalom Foundation got to catch up with Joseline, the cherubic toddler who had a massive growth removed from her neck here last summer.

When de Gallardo first met Joseline during a medical mission trip, she learned Joseline had the growth since birth. Sacs filled with lymph fluid grew steadily over the years until the growth was so large it began to affect her ability to eat, play, and sometimes even breathe normally.

“It had become so heavy that when she played, she tilted toward that side, and she stopped turning her head so much,” de Gallardo recalled.

Steve Goudy, M.D., assistant professor of Pediatric Otolaryngology at the Monroe Carell Jr. Children’s Hospital at Vanderbilt, agreed to do surgery since all other efforts to reduce the growth’s size had failed. The Children’s Hospital agreed to donate almost all the costs involved, with the Shalom Foundation picking up the rest, and arranging for Joseline’s transportation to the U.S., and her accommodations with volunteers while she and her mother, Veronica, were here.

The last time Goudy saw her was in September just before Joseline and Veronica headed back home. de Gallardo returned to Guatemala City as well. She lives there with her family, working with the Shalom Foundation long distance most of the time.

This past week, de Gallardo decided to meet with Veronica and Joseline for a shopping trip.

Joseline, her mother Veronica and Sofia, de Gallardo’s daughter

“My daughter, Sofia, needed supplies for her pre-school class and so we arranged to meet a mall close to where Veronica lives,” de Gallardo said. “Joseline was shy at first, as she always is, but I was struck by how much she has grown. She is now starting to say more words and communicate easier than before. She has gained weight; her cheeks have filled out, even her hair looks better. She just looked so healthy.”

de Gallardo invited Veronica and Joseline, who will turn 3 in May, to come home with them for doughnuts.

“She went on a ride on Sofia’s scooter.  I got her on it and pushed her slowly because she is still tiny, we have a wide street so she was very happy to play,” de Gallardo said.

And de Gallardo’s involvement through the Shalom Foundation will continue. Goudy had told the family that says if they want more cosmetic surgery in future, they could do a follow up procedure. For now, she is being seen by local physicians, and Veronica has just asked for a summary of her case from Goudy. Once de Gallardo receives it, she will go over what it contains with Veronica so she can share it with Joseline’s local physician.

“Joseline’s whole family is doing much better. Veronica feels more confident that Joseline will be ok, so that she is now looking for a job to help her family’s income. It was a life changing experience for their entire family and an amazing life story that I was blessed to be part of.  We are grateful to God and to the combined efforts of the Children’s Hospital and The Shalom Foundation,” de Gallardo said.

Added Goudy, ”The whole medical team that cared for Joseline here at Children’s Hospital is thrilled that she is doing so well. It is a testament to the resilience of children and shows how much can be accomplished by a community effort.  We are hopeful that she will be able to integrate easily into the age appropriate activities, with school not too far off. On future missions we hope that we can monitor Joseline’s progress. We are all very proud of how far Joseline has come.”  

After three months of procedures and scans and one marathon surgery, Joseline is finally ready to return home to Guatemala.

This Saturday, she and her mother Veronica will be flying with volunteers who will be leaving for the next surgical mission to Guatemala coordinated by the Monroe Carell Children’s Hospital at Vanderbilt and The Shalom Foundation, a Nashville-based group that organizes international medical missions.

“It’s like a homecoming,” said Steven Goudy, M.D. “I’m excited for her to get to home. It’s been an overall success, and we’re sending home a happy child and mom to Guatemala.”

Joseline was at Children’s Hospital Sept. 19 for a procedure much like the one she had Sept. 2. Radiologist Mark Bittles, M.D., injected medicine to treat a few more places on her neck that were ballooning up. She also had more plastic drains placed under her skin.

“What Dr. Bittles did will continue to improve things, and she can always come back, depending on her family and finances,” Goudy said. “I’m satisfied. We improved her function and cosmetics. We met the major goals, but we can address things again down the road.”

The Shalom Foundation, which has been integral in providing this opportunity for Joseline, has organized a send-off celebration for her tomorrow evening.

“Joseline is doing very well following her surgery. Over the last few weeks, she has proven to be a real fighter. She is playing, laughing and smiling again,” said Steve Moore, chairman of The Shalom Foundation. “We are so pleased with the good outcome for her future and her health.”

Saturday will mark the fourth time that Children’s Hospital and The Shalom Foundation have teamed up to take top-notch medical care to the children of Guatemala. On this trip, they will also be announcing funding to support a campaign to renovate a Guatemalan hospital into a state-of-the-art surgery center to serve the community more permanently.

Stayed tuned as Lori Graves, R.N., takes over the International Blog to chronicle the team’s efforts to bring more life-changing head, neck and facial surgeries to the children of Guatemala City, Guatemala.

In the evenings as I exit Children’s Hospital for the day, there is usually a child playing on the Grand Staircase, giddily climbing up or sliding down. Yesterday, there was a toddler in jeans and a red t-shirt holding on to the railing and jumping lightly down each step. As I passed, I turned to smile at her and saw the tell-tale shy smile of Joseline.

With a new bob haircut, Joseline looked as cute as ever as she ran back and forth between her mother and me, smiling at both of us. It was wonderful to see Joseline playing so enthusiastically, but I was a little worried when I noticed her neck — she looked like she had swallowed a baseball.

An MRI revealed that fluid was collecting in cysts in Joseline’s neck. Wednesday morning, Mark Bittles, M.D., an interventional radiologist, installed more drains and injected medicine to shrink the cysts. The hope is to allow the skin in her neck to heal together so that fluid will not be able to collect there in the future.

Joseline is expected to stay in the hospital overnight. The drains will stay in for a week or two, and then doctors will monitor her to see if fluid returns.

“We’re all very happy she’s done so well and responded to the treatments,” Steven Goudy, M.D., said. “We hope that this is the last leg of her journey in Nashville and that we can send her home to her family in Guatemala.”

To see a slide show about Joseline’s re-admission, click here.

Joseline had to return to Children’s Hospital yesterday after accidentally pulling out her drain. She now has a large dressing over the site of her surgery that is nearly the size of the mass she used to have. Steven Goudy, M.D., said the dressing is applying pressure to the area to prevent fluid from returning and making her neck balloon up again. He said the drain came out a little earlier than they hoped, but they won’t rush to put it back in. They will monitor her, and she may be able to leave the hospital tomorrow.

There is some positive news for Joseline. Goudy said she had a swallow study yesterday and is doing much better with swallowing food. And despite the drainage setbacks and such a lengthy stay away from home (it’s been over a month now), both Joseline and her mother Veronica seem to be in good spirits.

When I went to visit her this morning with photographer Dana Johnson, Joseline was very wary of us and buried her face in her mother’s chest. It was beginning to look like we wouldn’t get any good photos until Dana’s cell phone rang. The music instantly perked Joseline up. I started playing with some toys that were on the floor, and gradually Joseline demanded that all the toys be on the bed with her. She has mastered the Magnadoodle and making a puppy jack-in-the-box pop out of its doghouse. Dana and I did our best to coax a smile out of Joseline – including goofy faces and bad dancing – but she finally cracked when her mother tickled her.

It is still unknown when Joseline and Veronica will get to return to Guatemala, and Goudy said Joseline is in a holding pattern until they can determine that everything is ok.

Joseline was discharged from Children’s Hospital last Friday, July 18, but had to return to the Pediatric Emergency Department yesterday because the drain that empties fluid from her incision was falling out.

She has an appointment with Steven Goudy, M.D., next week. “Once the drain is out and she is fine, we can declare things a wrap,” he said.

I quickly peeked in on Joseline this morning to get an update. I was relieved to find a Spanish-speaking visitor, Luis Sura, pastor of Iglesia de las Américas. I was afraid I would have to resort to very bad Spanish and pantomimes to get information on Joseline.

The Iglesia (“church” in Spanish) has welcomed Joseline and her mother, Veronica, into their congregation with open arms, inviting them to their worship services and providing support during this difficult time. One family that attends the church will be hosting Veronica and Joseline when they leave the hospital. 

Through Sura, I found out that Joseline is no longer using a feeding tube. It is still connected, but she is enjoying solid food. The left side of her face is still not moving well, but both Sura and Veronica said it was improving. 

The biggest change in Joseline is her growing fear of anyone who doesn’t speak Spanish. She’s been poked and prodded by too many members of that population. She sat warily on her mother’s lap and wouldn’t look me in the eye, so I kept the visit very brief. I’m sure she went right back to her pile of toys when I left.

To see CBS’ story on Joseline, click on the picture above.

Joseline has made a major turnaround since I saw her last Thursday. She’s no longer the sleeping girl under a web of tubes and wires — she’s back to her old playful self. Joseline has moved out of the critical care unit to a regular room, and over the weekend, she reportedly felt so good she was running around the halls.

When I saw her, she was playing with a box of crayons, but her mom, Veronica, said she has been favoring toy cars and anything that makes music. They weren’t able to do a swallowing test on Friday because, in the words of Steven Goudy, M.D., “She’s tired of being poked,” so she still has a feeding tube.

She was so active over the weekend that they had to lengthen the tube so she could follow her mom around. Goudy said they will take a more relaxed bedside approach to determine whether she’s ready to swallow.  A physical and occupational therapy team came by to make their first evaluation. Joseline is still tilting her head to the right, away from where the mass used to be, like she did before its removal.

Veronica said she has noticed the absence of the mass in the mirror and touches where it was. She seems to be able to move her arms and neck, but there is some concern about movement in the left side of her face.

I was thrilled to finally see Joseline smile today, even if was just a little half smile, but that half smile is evidence that her left side may need some extra healing. 

Local news crews from CBS and Fox were at Children’s Hospital to follow up on Joseline, and this time, she did show them her playful side.

View a slide show of Joseline’s treatment 

After 14 hours of surgery, Joseline is beginning to look more like the normal 2-year-old that everyone was hoping for. She is still sedated and connected to a breathing tube, but underneath all the medical equipment, she has a beautiful new neck.

The surgery to remove Joseline’s mass began July 8 at 9 a.m. and finished after 11 p.m. I was able to visit the operating room throughout the day to record video and observe the surgical team at work. As they were prepping Joseline, Steven Goudy, M.D., explained her MRI from last week. It showed that the mass was pushing her airway and two crucial blood vessels — the carotid artery and jugular vein — out of place. It also showed that the mass was made up of tiny balloons of fluid that would all have to be removed individually. It was then evident why the surgery was thought to be so urgent and expected to be so lengthy.

The plan was for Goudy to remove the neck portion first, and when he finished, Stephen Morrow, M.D., would remove the portion that extended into her chest. However, Goudy’s part took much longer than expected, and the decision was made to leave the chest portion to prevent potential complications. Two-thirds of the mass was removed.

The doctors are now waiting to see if Joseline can breathe and swallow on her own, and then they will have a better idea about the extent of her recovery.

Yesterday was a very long day for Joseline’s mother Veronica and Maria Jose, Director of Programs in Guatemala for the Shalom Foundation, as they waited for reports from the operating room, but Veronica said it was the day she had been waiting for her whole life. She said she hopes Joseline will eventually be able to run and play like any normal child. Although it is still early in Joseline’s recovery, hopes are high that she will have that normal childhood.

Early this morning, Joseline had an MRI and variety of scopes to assess the extent of the tumor in her chest cavity and its impact on her airway. Doctors were concerned she might need a tracheostomy (artificial airway through the neck directly to the lungs), which would require Joseline to stay in the hospital until her surgery next Tuesday. But that wasn’t necessary, and she was able to go home to her host family this afternoon. 

But first, she was in front of the cameras again. Channels 2, 4 and 17 and Metro Networks Radio visited Joseline in the recovery room. She was still a bit groggy from the procedures, so she slept on her mother’s lap while the cameras rolled and looked so sweet and content. Unfortunately, the news crews missed seeing the playful side of Joseline.

After they cleared out, she was ready to get up and walk around. Someone found her a big toy car to ride around in, and her mother wheeled her around the hall with a stuffed bunny by her side. She wasn’t quite ready to smile yet, but she is definitely on her way back to being her usual playful self. 

Although the Children’s Hospital and Shalom Foundation are thrilled to bring Joseline to America and provide this life-changing surgery, it might not be necessary in the future. The Shalom Foundation (www.theshalomfoundation.org) is in the planning stages of building a brand new surgery center in Guatemala. American surgical teams usually borrow operating rooms in the main hospital in Guatemala City, but the proper equipment is often lacking. The new surgical center will be up to American standards and allow even more teams to provide even better care. The Shalom Foundation is very committed to helping the needy children in Guatemala and is working toward a permanent medical presence, and will benefit from an already existing partnership with Children’s Hospital. 

When it was determined in December 2007 that the surgery was too delicate to be performed in Guatemala, the Shalom Foundation worked diligently to get Joseline and her mother, Veronica, to Children’s Hospital. Instrumental in that effort was Maria Jose Arenales. Maria Jose is Director of Programs in Guatemala for the Shalom Foundation, overseeing all of the medical, educational and construction projects that are performed there. She helped Veronica with the necessary paperwork to travel to the U.S., and then accompanied Veronica and Joseline on the trip.  Maria Jose is also doing a fabulous job of interpreting.

I had a little Spanish in high school (enough to know that “hola” is “hello” and “rojo” is “red”), but was still intimidated by the language barrier. But I’ve learned that a smile goes a long way, and Maria Jose is there for the rest. I was also very impressed with the Spanish skills of Steven Goudy, M.D. When he came to share the good news that Joseline didn’t require a trach (breathing tube), he explained nearly everything to Veronica in Spanish, only asking Maria Jose for the word for “mass” (which is “massa,” easy enough!).  

From the short time I’ve been following this story, it is obvious that the partnership between Children’s Hospital and the Shalom Foundation is very strong. It goes beyond partnership into friendship. Maria Jose is constantly greeting people from Children’s Hospital who have been to Guatemala on annual surgical trips, and they laugh and share memories. She said it is interesting to see everyone back in America at their real job, rather than the whirlwind trip that happens in Guatemala. Everyone seems very excited about the work they have done in Guatemala, but even more excited to be able to give Joseline the proper care she deserves here at Children’s Hospital. 

Now Joseline has a week at her host home to play and rest before the big day, July 8. Maria Jose says they plan on shopping and participating in the Fourth of July festivities.