Alia Akaliza: A young girl’s journey to the US for heart surgery

It’s every child’s dream to run around and play with others while growing up. But for 6-year- old Alia Akaliza it was different.Every time she tried to play, she lost her breath. She was suffering from Tetralogy of Fallot; it’s a situation whereby limited oxygen is pumped into the heart.

Monday, May 30, 2011
Brad Synder carries Akaliza at the Gisimba orphanage, months later after the heart surgery. (Photo by D. Umutesi)

It’s every child’s dream to run around and play with others while growing up. But for 6-year- old Alia Akaliza it was different.

Every time she tried to play, she lost her breath. She was suffering from Tetralogy of Fallot; it’s a situation whereby limited oxygen is pumped into the heart.

According to Mama Donata Mukagihana, Akaliza’s care taker at Gisimba Orphanage in Nyamirambo, said that she joined the orphanage with a heart problems
"A family from Nyamata brought Akaliza and her sister Brine Ingabire to the orphanage in January 2010.

Their mother Solange Musanintore had abandoned them,” Mama Donata narrates.

She said: "After some months here, Akaliza suffered from malaria and was taken for treatment. While at the hospital, the doctor discovered that she had a hole in her heart.

We were told that she would be listed for a heart surgery.”

During that time, she would not play or run like any normal child. She would get tired or nose bleed most of the time.

"She was so slim one would think the wind would blow her away. Luckily, we got visitors at from America who had come to volunteer at the orphanage and we told them about Akaliza. They promised us help,” Mama Donata xplains.

Karen Poulos one of the American volunteers at the orphanage fully sponsored for Akaliza‘s trip to the US for surgery.

However, the woman that was supposed travel with Akaliza was denied a visa therefore they had to find someone to take her.

Brad Snyder is a nurse (Health worker) with ‘Gardens for Health’ that partnered with the Rwandan Network for People Living with HIV/AIDS. He was approached by Julie Carney to help and go with Akaliza to United States of America for the operation
"I was going back home for Christmas when my friend Julie informed me Akaliza.

I jokingly accepted but later she told me it was serious,” Snyder explains.

Fortunately the surgery was to be performed at John Hopkins Hospital in Baltimore, Brad’s home area.

"Julie told me about Akaliza‘s situation and I offered to play my part. We set off in mid December, there was no problem since I was used to children and it seemed so natural,” Snyder recalls.
He further adds that when they set off Kanombe airport, Akaliza was so excited since it was her first time on a plane.

"Ticket issues arouse when we landed in Kenya because Akaliza’s ticket was reserved and not booked. The ticket agents did not connect so well so I had to buy a ticket for Akaliza with my credit card,” Snyder discloses
He said: "During all the scuffle of the ticket, I sat with Akaliza to get something to drink at the airport, and she had a sad face.

She immediately started crying saying ‘Ndashaka gutaha’. I didn’t know what it meant so I got out my Kinyarwanda- English dictionary and found out she wanted to go home.”
Snyder says he was so heartbroken with this statement that he tried to use a few comforting words in Kinyarwanda but Akaliza continued to cry.

"She cried for over an hour, and I decided to walk to the Airport’s customer service desk and requested the lady at the desk to peg and inquire if there was anyone from Rwanda.

In just 10minutes, six people appeared at the desk and a woman called Francine took Akaliza in her arms and comforted her in Kinyarwanda,” Snyder recalls
He adds, Akaliza lacked motherly touch at that time. She immediately calmed down with just a cuddle from Francine.

After the eight-hours at the airport in Nairobi, they travelled for several until they landed in Paris.

"The moment we landed in Paris, the crying and ‘Ndashaka gutaha’ statement resumed. This time I didn’t go to the customer care desk at the airport although I approached a woman (Mary Baine), the current Permanent Secretary in the Ministry of Foreign Affairs), I had no idea who she was but looked kind of familiar,” Snyder explains. "I asked her if she was Rwandan and she said yes .I told her what was happeneing .Akaliza was crying uncontrollably.”
Although Mary Baine was travelling with her two sons to Washington, she cuddled, showered and took care of Akaliza for the time they spent at the airport.

"It was amazing on how Mary Baine took care of Akaliza. The most important thing I learnt throughout this situation is that everything works out in its own way. It’s so unique to see all these people offering help an incident they didn’t know about,” says Snyder.
The same help was offered by different people most especially Rwandans in the US during before and after the surgery.

Snyder’s family welcomed her and she became close friend with his five- year- old cousin Allie. They played together and connected easily, they communicated in their own despite of the language barrier. 
  The first night Akaliza requested to share a bed with Snyder’s mum Patty Snyder.

 "During the journey and the first few days in US, Akaliza would get excited and then cry for some hours. We used to communicate on phone or Skype with people with mama Donata, Brine and the children at the orphanage,” Snyder recalls adding that his friend Sunday Justin Nzitatira, took a computer to the orphanage twice.
"On Skype, would ask for her sister Brine and mama Donata and I promised her she would talk to them soon.

I explained to her that after the surgery she had to come back in Rwanda. Snyder always asked for the meaning of some statement Akaliza said so that he would know what to reply to her,” says Nzitatira.
Nzitatira had meant Akaliza before she travelled. They had shopped together.

Their relationship became strong. Akaliza likes Nzitatira because she would relax when they talked on phone or Skype.

A lot of explaining concerning the surgery was done and several people interpreted for Akaliza. Marie Claire, Rwandan student in Baltimore helped to translate to Akaliza while in hospital.
"We brought home a few types of equipment that would be used during the surgery so that Akaliza would get used to them. 

For instance she would play with oxygen mask; this helped because she did not panic t when she went for the surgery,” says Snyder.

The surgery took six hours then she was transferred to the intensive care unit. The surgery was done on a Monday; she was able to walk around the hospital on Wednesday. On Saturday she was discharged.

"She woke amidst machines and she said ‘Ndashaka inanansi’ ‘I want a pineapple’.

The nurses cracked out laughing because most children ask for pizza or ice cream,” Snyder recalls

She was in a lot of pain and felt uncomfortable but she neither cried nor proclaimed her famous statement ‘Ndashaka gutaha’ literally meaning ‘l want to go home’.
Snyder recalls It was really a fast recovery

They returned to Rwanda in the end January. It has been five months after the surgery and Akaliza has not had any complications except one scary night.

"Mama Donata called me at 2am, saying that Akaliza was vomiting blood and nose bleeding. We rushed her to the hospital and we were told it was nothing serious,” Snyder explains Akaliza was given tablets which she is to take daily for one year.

The shy and reserved Akaliza shared what she misses the most in the US.

 "I want to go back to the US to see Allie (Snyder‘s cousin),”she says "While in the US she was amazed by many things but she liked the automatic doors.

She would run through them for as long as she could,” Snyder adds.
Mama Donata said that Akaliza will soon join a nearby.
 
"We don’t want her to walk long distances because it could affect her recovery. In fact we try to stop her from running around but she insists that she is fine and enjoys playing with other children,” observes Mama Donata.

Dorau20@yahoo.co.uk