Patient Stories - 2/3 - International Children's Heart Foundation

July 26, 2016

Arvin Rampersaud

Here is a great example of how your support truly saves lives!

During our last trip to Guyana, we met 7-month old Arvin Rampersaud and his favorite brown toy horse. He was born in the town of Albion, where his parents are both gardeners. He was transferred to Georgetown Public Hospital Corporation (GPHC) after his parents rushed him to a local hospital when he was having difficulty breathing. An echocardiogram showed that Arvin suffered from a severe form of Tetralogy of Fallot, which ultimately meant he did not have enough oxygenated blood circulating through his body

During a diagnostic catheterization study, Arvin’s oxygen levels became dangerously low, and he had to be rushed to the operating room for an emergency surgery. Team BabyHeart was in the right place at the right time thanks to your support, and they were able to place a shunt between the vessels of his heart that helped to increase the blood flow to the lungs, and saved his life! Had the BabyHeart team not been at GPHC training the local team, Arvin surely would have died. This shows the importance of the goal of helping the local team increase the capacity to treat local children born with cardiac defects

Arvin is continuing to improve with his trusty toy horse by his side, and his oxygen levels are good, but he will still need one or two more surgeries to completely fix his heart when he gets a little older. None of this would be possible without your generosity. Your support makes miracles happen!

October 9, 2015

Jonathan Sant-Louis

On July 18, 2013, 3 days before the start of our medical mission trip to Santiago, Dominican Republic, ICHF received a call from Haiti that one of the young men planned for surgery the following week had been brought to the hospital in very poor condition. Jonathan, who was 16 years old at the time, was 5’7” and weighed a meager 90 pounds. Due to a previous illness of rheumatic fever, he acquired damage to his Mitral and Aortic Valves and was in severe heart failure.

He was transported immediately to Santiago, and our team was able to start caring for him upon our arrival 3 days later. After a week of medical treatment, it was determined that he was in the best condition he could be in to undergo surgery. On July 29, 2013, he underwent a double valve replacement. His surgery was long, and his heart was extremely weak after the surgery. However, he recovered well, and was eventually sent back home to Haiti a few weeks later.

During our recent trip to Haiti, Jonathan came in for a follow up echo with the ICHF cardiologist, and as you can see from the photo, he is thriving! He has grown like a weed, and is going to school and enjoying life!

May 15, 2015

Amy’s Story

Amy is a 5–year-old girl that was born with a severe form of a congenital heart disease called Tetralogy of Fallot.

When she was a baby, the ICHF team performed urgent surgery on her (inserted a Blalock–Taussig shunt) in order to provide oxygen to her lungs until she could grow and have a curative surgery. Five years later, she was still waiting for a definite surgery that would allow her to have a normal life. She always told her mom that she would like to have a party after her surgery, because that would mean that she was cured.

Amy was taking aspirin to prevent her blood from clotting, which was necessary after her first heart surgery. After a diagnostic heart catheterization, her family was told to stop her medication for the test, but they never restarted it again. Amy was scheduled to have surgery on this ICHF trip, but due to cavities, she could not be operated and was sent home to see a dentist.

On May 4, Amy became very unwell, and she was brought to the emergency department in Guayaquil. She was blue due to extremely low oxygen saturations of 30 percent in her blood. An echo showed that she had a clot in her BT shunt, and without urgent surgery, she would die. Luckily for her, some of the ICHF team was still in Guayaquil helping provide resources to the local surgical team. The ICU team took care of Amy on arrival, and Dr. Montero performed a successful complete repair of her Tetralogy of Fallot the day after. Now, she is ready for discharge, and she will have a party as soon as she arrives home. She is our miracle girl from Ecuador.

Spanish Translation:

Amy tiene 5 años, nació con una forma muy severa de cardiopatía llamada Tetralogía de Fallot. Fue operada urgentemente cuando era un bebe, (fistula de Blalock Taussig) para suministrar oxígeno a sus pulmones, ya que su situación era muy critica. De esa forma, podría crecer y esperar para su siguiente cirugía que sería curativa. 5 años más tarde, Amy estaba aun esperando por esa cirugía que no llegaba y que le permitiría tener una vida normal como el resto de los niños. Amy siempre le decía a su madre que si un día le operaban le gustaría tener una fiesta, por que eso significaría que estaba curada.

Por su enfermedad, Amy tenía que tomar aspirina, para evitar la formación de coágulos en su sangre. La medicación fue parada para un cateterismo que ella necesitaba y nunca fue retomada otra vez. Amy estaba programada para tener su cirugía en la misión de Abril de ICHF pero debido a sus caries, no pudo ser operada y fue enviada a casa a ir al dentista.

El 4 de Mayo Amy se desmayó en casa, sus padres la llevaron a urgencias donde se vió que tenia saturaciones de oxigeno muy bajas (30%) debido a un coagulo en su previa cirugía y sin una operación urgente Amy moriría pronto. Por suerte, parte del equipo de ICHF todavía estaba en Guayaquil realizando cirugía cardiaca en niños sin recursos. Amy fue ingresada en la unidad de cuidados intensivos donde se le estabilizó y tuvo su cirugía el día siguiente. Dr. Montero le hizo una reparación completa de su Tetralogía de Fallot. Ahora, totalmente recuperada esta lista para irse de alta y tener esa fiesta que tanto había deseado. Nosotros la llamamos la niña milagro de ecuador.

April 24, 2015

La historia de Valentina

En los primeros días de Abril de 2014, Valentina con 7 años de edad fue diagnosticada de 3 cardiopatías congénitas: CIA, Drenaje Venoso Anómalo Parcial y Dextrocardia. Debía someterse a un cateterismo cardiaco para medir las presiones pulmonares y ver si se le podía realizar la cirugía de corrección. Gracias a Dios los resultados de ese estudio fueron favorables y Valentina estaba lista para dar el siguiente paso. Fueron días difíciles para la familia, pero ella nos impresiono a todos con su gran valentía y fe.

Pasaron los meses y se programo su cirugía para el Sábado 02 de Agosto, pues estábamos esperando la visita del Dr. Soto y de Randa, voluntarios de ICHF, quienes fueron tan generosos de venir a Paraguay un fin de semana en medio de sus actividades para dar una mano con esta paciente al equipo de Médicos y enfermeras del Hospital Pediátrico Niños de Acosta Ñu.

La cirugía fue un éxito.. pudieron corregir las cardiopatías sin mayores inconvenientes y la recuperación fue aun mas exitosa, sin ninguna complicación y con tanta rapidez que al tercer día, el Martes 05 de Agosto, Valentina volvió a casa. La familia y los amigos nos acompañaron todo el tiempo en el Hospital.

Durante su estadía en UCI, Valentina se aprendió los nombres de los otros 3 niños que estaban internados con ella, y estaba pendiente de la evolución de ellos pues eran todos bebes pequeños en estado mas delicado que ella. Al salir hizo un dibujo de la sala de UCI, con todos los pacientes que estaban alli y los médicos y las enfermeras que los atendían.

Ahora el estado de salud de ella es excelente, volvió a realizar sus actividades físicas y juega y corre como la niña saludable que es.

Ella es una niña maravillosa, muy madura para su edad.. todo el tiempo fue consciente de que tenia que pasar por cosas difíciles para poder conservar su salud.. y nunca tuvo miedo. Eso fue lo que nos ayudo a nosotros los padres y al resto de la familia a estar siempre confiados en que todo iba a salir bien, siempre en manos de Dios y con la ayuda de los grandes profesionales que la atendieron.

Ella cumple 9 años el lunes 20 de abril, y esta mas feliz que nunca.. muestra orgullosa su cicatriz y dice que es su “cutie mark”, algo que nadie mas tiene y que es la prueba de lo valiente que fue.

Estamos profundamente agradecidos por su vida y cada dia que pasa es un regalo.. y los vivimos con gran felicidad.

– María Martínez y Gerardo González

Valentina’ Story In English

In the first days of April 2014, Valentina, 7 years old, was diagnosed with congenital heart disease: ASD, partial anomalous venous drainage and Dextrocardia. She was to undergo cardiac catheterization to measure the pulmonary pressures and see if she was a candidate for surgery. Thank God the results of this study were favorable and Valentina was ready to take the next step. They were difficult days for the family, but she impressed us all with her great courage and faith.

Valentina’s incredible strength and courage

Months passed and surgery was scheduled for Saturday August 2, because we were expecting a visit from Dr. Soto and Randa, ICHF volunteers, who were so generous to come to Paraguay for a weekend in the middle of their holidays to lend a hand with this patient’s team of doctors and nurses at the children’s hospital, Pediatric Hospital Acosta Nu.

The surgery was a success…the surgeons were able to correct the defect without major inconveniences and her recovery was even more successful without any complications and so quickly that the third day, Tuesday Aug. 5, Valentina returned home. Family and friends accompanied us all the time in the hospital.

During her stay in ICU, Valentina learned the names of the other 3 children who were also hospitalized with her, and she followed their evolution, as they were all little babies in more delicate state. Before she left, she drew a picture of the ICU with all patients who were there and the doctors and nurses that attended.

Another child’s life saved!

Now the state of her health is excellent. She returned to her physical activities, and she plays and runs as the healthy girl she is.

She is a wonderful, mature girl, always aware that she had to go through difficult things to stay healthy, but she was never afraid. That’s what helped us as parents and other family members to always be confident that everything would be fine knowing she was in the hands of God and with the help of the great professionals that attended.

She will turn nine years on Monday, April 20 and is happier than ever. She proudly shows her scar and calls it her “cutie mark”, something no one else has and it is proof of how brave she was.

We are deeply grateful for this life and every day that passes is a gift, and for that we live with great happiness.

– Maria Martinez and Gerardo Gonzalez

To support more children like Valentina and give the gift of a healed heart, Donate today!

February 18, 2015

Patient Story ~ Wilgrens Lebrun

Wilgrens is a 15-year-old boy, who has had anything but an easy life. When Wilgrens was 7 years old, he was hit by a motorcycle, and during his hospitalization, he had an X-ray that showed a problem with his heart. His childhood was later complicated by fevers and a six-month hospitalization for tuberculosis.

He often reported getting short of breath easily when walking and running, and sometimes, he would get dizzy. He would take himself to the hospital, where he was told, “you have a heart problem,” but no one would give him medication to treat the problem. Occasionally, the hospital would give him pain medication for his painful breathing.

As if all this was not enough, Wilgrens’ father died from tuberculosis, and his mother was killed in the earthquake of 2010. At the age of 12, he was an orphan. His sister told him he could not live with her because she doubted her capability to care for him with his heart condition. So, he found himself living in a tent city with his sister-in-law in what has been called the “worst city in the world” and the “poorest of the poor” in Cité Soley, Haiti.

Through word of mouth, Wilgrens was put in contact with CHADASHA, an organization that partners with ICHF to help Haitian children receive treatment for heart disease. In May of 2013, Wilgrens, along with his sister-in-law, made the eight-hour journey by bus from Port-au–Prince, Haiti, to Santo Domingo, Dominican Republic. He was evaluated by the ICHF cardiologist and diagnosed with severe mitral stenosis secondary to rheumatic fever and was told he would need surgery to repair the valve

Two months later, ICHF had a surgical mission trip to Santiago, Dominican Republic. Wilgrens made the journey back to Dominican Republic, and the local surgeon in Santiago, with assistance from the ICHF surgical team, replaced Wilgrens’ mitral valve.

Wilgrens returned to Haiti with his new heart valve, but fortunately, he is no longer living in Cité Soley. He has a safe home in one of the orphanages, has three meals a day and has access to medication. Staff members at the orphanage say that he is a hard worker, a smart young man and a great mentor to the younger children.

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