Hi! Six year old Génesis Sofía Reyes Sánchez washttps://kidshealth.org/en/parents/glenn.html) born, in simple terms, with only half of her heart (Hypoplastic Left Heart Syndrome) in Costa Rica. She has already had three operations.
Now, she needs one more surgery, and her family is in a race against time.
Her most recent surgery, which was conducted three years ago in the Children’s Hospital was initially successful, but its effects did not last. As time passed and Sofía grew, the surgery’s impacts proved insufficient.
In Costa Rica, everyone must wait for medical care under normal circumstances, but the pandemic delayed all specialized surgeries by at least two additional years. That means that Sofia might not have an opportunity for surgery until 2024 or 2025. By then it might be too late.
The doctor says we don't have time to wait. Sofía has grown too much. Already, the Glenn Procedure (described here: her most recent open-heart surgery, is not working, which is why we are calling out for help. She truly needs a different procedure.
“It’s life of death. I’m in a race against time for my daughter’s life. If she needs emergency surgery tomorrow, they won’t be able to do it here,” explains her mother.
The main problem Sofía is facing is that not enough oxygen reaches her heart and other organs, especially when she runs around like a typical little girl.
With this in mind, Sofía’s family contacted a hospital in Barcelona, Spain to find out if it might be possible to perform the surgery there.
Making this possible would not be an easy task. The good news is that she was selected as patient they could treat. However, the cost is daunting. The family would need to raise $100,000 to cover all of her medical bills and the travel expenses that would allow her mother, Laura Sánchez, to accompany her on this long journey and care for her.
Laura told us that they learned about the possibility of having the surgery in Barcelona at the Hospital Quirón Dexeus after contacting a representative in Costa Rica. The cardiologist who treats Sofía called the medical center to ask for help.
The doctor sent an email explaining Sofía’s case. After analyzing her medical file, they determined that she would be an appropriate candidate for the surgery.
“I have complete faith that Dr. Teresa De la Torre will be the person who performs the surgery. She has acted as a liaison with the hospital. She told me, “Mama, your daughter is perfect for this intervention, and we agree with the Costa Rican doctors’ conclusions. There is no time to wait,” explained her mother.
Laura started to work with her friends and family to raise funds. They held a raffle to pay for Sofía’s first appointment. Additionally, it will cost money to get their passports and pay for the vaccines required before leaving the country.
Doctor De la Torre, Surgical Coordinator of the Hospital Quirón Dexeus, sees a positive outcome for Sofía, but only if they act now.
“She has a good record of medical attention. The problem is that the Glenn Procedure, which was done 3 years ago, doesn’t last very long. Her oxygen levels have dropped significantly. A healthy heart should be at 100%. After the Glenn Procedure the typical oxygen level falls to around 85%. Unfortunately, Sofia’s oxygen levels have dropped down to 50%, which is negatively impacting her brain, all her organs, and could ultimately cost her her life.”
“The procedure they will do in Barcelona is called the Fontan Procedure (for more information: It involves connecting the inferior and superior vena cava, thus sending the blood directly to her lungs so that her oxygenation is normal.”
“This surgery will improve Sofia’s quality of life. This operation has a high success rate, and I have faith that I will be able to take her to the hospital in Spain so that she will survive,” said her mother, full of hope.
Hello !! Genesis Sofía Reyes Sánchez is six years old and was born, in simple words, with only half her heart, a fact that has forced her to undergo three operations.
And the thing is, she needs one more surgery, which is why her family is in a race against time.
The last surgery was three years ago at Children's Hospital and it was successful, but it was not a long-lasting procedure; With the passage of time and the normal growth of the little girl, what was done turned out to be insufficient.
In the country, she must wait for her turn and, on top of that, the two years of the pandemic delayed all the specialties, which means that the Genesis operation would arrive in 2024 or 2025.
other paths With this panorama in sight, the family contacted a hospital in Barcelona (Spain) to see if it was possible for them to operate there.
Achieving it is not an easy task. The good thing is that the first filter has already passed (which was to be selected as a case to be treated), and now the family needs to raise $100,000 for the girl and her mother, Laura Sánchez, to travel. And so be able to cover all medical expenses, exams, tickets, among others.
The doctor saw her and told me that we don't have time, she is a girl who has grown a lot. Already Glenn's surgery, which was the last one he had, isn't working 100 percent, so I'm crying out for help because my daughter needs that (new) surgery.
“It is life or death, I am in a race against time for the life of my daughter. If she needed it tomorrow as an emergency right now, they can't do it here,” explained the mother. The main problem that Genesis faces is that the amount of oxygen that reaches her heart and other organs is very low, especially if she is agitated while running, a very normal activity for a girl her age.
On how she learned about the possibility of operating on her at the Quirón Dexeus Hospital in Barcelona, Laura told us that she began to investigate and contacted a representative in Costa Rica and through the cardiologist who sees Sofía, they called the medical center to ask for help.
She sent an email in which she explained the case and then they asked her for the medical file to analyze it, thus determining that the girl is suitable for surgery.
“I have every faith that Dr. Teresa De la Torre is going to be the one to operate on her, she is the one who has served as a liaison with the hospital. They told me 'mom, her daughter is perfect to be able to intervene and we agree with what they have told her there (in Costa Rica) that there is no time,' explained the mother...
Laura began to ask for the collaboration of her relatives by doing raffles to pay for the first date; She also requires money to get her passports and pay for a rotavirus vaccine that they must give the little girl before taking her out of the country.
Dr. De la Torre, coordinator of the surgical program at Hospital Quirón Dexeus, sees a positive outlook for Sofía, yes, she must act soon. “She has a good medical care record, the problem is that the Glenn (operation), the one she had three years ago, lasts a short time and her oxygen saturation has already dropped a lot. In a normal heart she should be at a hundred, with Glenn's operation normal is 85 and she's down to fifty, which is causing her brain and all her organs to malfunction, which could cost her her life."
The procedure that will be done in Barcelona is an operation called Fontan, which consists of connecting the inferior vena cava with the superior vena cava and thus sending the blood directly to the lungs so that oxygenation is normal.
“With this we give Sofia quality of life, they are very successful surgeries and I have the faith that I can take her and that it will be so,” said the mother full of hope.
EN ESPAÑOL —————————————
Hola !! Génesis Sofía Reyes Sánchez tiene seis años y nació, en palabras sencillas, solo con la mitad del corazón, un hecho que ha obligado a que la operen tres veces.
Y el asunto es que necesita una cirugía más, razón por la cual su familia se encuentra en una carrera contra el tiempo.
La última cirugía fue hace tres años en el Hospital de Niños y fue exitosa, pero no se trató de un procedimiento duradero; con el paso del tiempo y el crecimiento normal de la chiquita, lo hecho resultó insuficiente.
En el país debe esperar a que le llegue el turno y, encima de eso, los dos años de pandemia atrasaron todas las especialidades, lo cual significa que la operación de Génesis llegaría en el 2024 o el 2025.
Con ese panorama a la vista, la familia se puso en contacto con un hospital de Barcelona (España) para ver si es posible que la operen allá.
Lograrlo no es una tarea fácil. Lo bueno es que ya pasó el primer filtro (que era ser seleccionada como caso a tratar), y ahora la familia necesita reunir 100.000$ para que viajen la niña y su mamá, Laura Sánchez. Y asi poder cubrir con todos los gastos medicos, examenes, pasajes, entre otros.
El médico la vio y me dijo que no tenemos tiempo, es una niña que ha crecido mucho. Ya la cirugía de Glenn, que fue la última que le practicaron, no está funcionando al cien por ciento, por lo que estoy pidiendo auxilio a gritos porque mi hija necesita esa cirugía (nueva).
“Es de vida o muerte, estoy en una carrera contra el tiempo por la vida de mi hija. Si ella la necesitara mañana de emergencia en este momento, aquí no la pueden hacer”, explicó la mamá.
El principal problema que enfrenta Génesis es que la cantidad de oxígeno que le llega al corazón y a otros órganos es muy baja, en especial si se agita corriendo, actividad muy normal en una niña de su edad.
Sobre cómo supo de la posibilidad de operarla en el Hospital Quirón Dexeus, en Barcelona, Laura nos contó que empezó a investigar y contactó a una representante en Costa Rica y por medio del médico cardiólogo que ve a Sofía llamaron al centro médico para pedir ayuda.
Mandó un correo en el cual explicaba el caso y entonces le pidieron el expediente médico para analizarlo, así determinaron que la niña es apta para la cirugía.
“Tengo toda la fe de que la doctora Teresa De la Torre va a ser quien la opere, ella es la que ha servido de enlace con el hospital. Me dijeron ‘mamá, su hija está perfecta para poderla intervenir y coincidimos con lo que le han dicho allá (en Costa Rica) de que no hay tiempo”, explicó la madre…
Laura empezó a pedir la colaboración de sus familiares haciendo rifas para pagar la primera cita; además requiere plata para sacar los pasaportes y pagar una vacuna contra el rotavirus que deben ponerle a la chiquita antes de sacarla del país.
La doctora De la Torre, coordinadora del programa quirúrgico del Hospital Quirón Dexeus, ve un panorama positivo para Sofía, eso sí, se debe actuar pronto.
“Ella tiene un buen récord de atención médica, el problema es que la (operación) Glenn, la que le hicieron hace tres años, dura poco y ya ha bajado mucho su saturación de oxígeno. En un corazón normal debe estar en cien, con la operación de Glenn lo normal es 85 y ella está bajando hasta cincuenta, lo que hace funcionar mal su cerebro y todos los órganos, lo que le podría costar la vida”
El procedimiento que le harán en Barcelona es una operación denominada Fontan, que consiste en conectar la vena cava inferior con la vena cava superior y así hacer llegar la sangre directamente a los pulmones para que la oxigenación sea normal.
“Con esto le damos calidad de vida a Sofía, son cirugías muy exitosas y tengo la fe de poder llevarla y que así sea”, dijo la mamá llena de esperanza.
Anexo carta del Hospital de España