International Children's Heart Foundation

Where Hope Comes to Life

VOLUNTEER

A Life Saved Twice

A common aspect of children suffering with congenital heart defects is Down syndrome. Many cases Babyheart teams care for on missions are children with both a heart defect and Down syndrome. Also sadly, some of these children come from orphanages, whose parents have abandoned them, unable or unwilling to offer proper care for their child who requires special needs. This is what happened to a little Macedonian newborn named Mario. Born with Down syndrome and multiple heart defects he was brought to our Babyheart team on the mission to Skopje, Macedonia. His defects caused a severe depletion in oxygenated blood from getting to his body. He had to fight for every breath. That was until he received a successful operation by Babyheart surgeon, Dr. Marcelo Cardarelli, a ligation PDA and a VSD closure. Then he was off to receive post-operative care in the ICU where he got to meet Respiratory Therapist, Kim Kimball, an ICHF medical volunteer. The Babyheart team saved his life but even with a new and healthy heart, he needed saving of another kind. The staff at Mario’s orphanage did the best they could, but the ratio of 1 to 15 of caregiver to child was not sufficient, especially for the special healthcare needs required by Mario. His chances following a return to the orphanage were not good. What Mario required was something he never had since he came into this world, a kind and loving family. An adoptive family could provide him with a healthy upbringing and a normal life.

That’s where Kim enters the story. An adoptive mother of three children herself, she is very sympathetic to the plight of abandoned children, without hope and not given a chance. Her work as a Bayheart volunteer helped save Mario’s life but Kim did not stop there. She thought about his quality of life long after his heart surgery. She was compelled to do something for Mario and help find him a family. In effect saving his life again from languishing as an unwanted orphan due to the stigma of having Down syndrome and a heart defect. Mario now has a new heart and new hope. “All he needs is a little love, nourishment, and care,” according to Kim.

Kim knew where to go for help. She contacted the National Down Syndrome Adoption Network (NDSAN), a US-based organization whose mission is to ensure that every child with Down syndrome has the opportunity to grow up in a loving family. All it took was an email and a Facebook post and Stephanie Thompson, co-director of NDSAN responded to Kim to begin the process. Then Kim reached out to Macedonia’s Minister of Labor and Social Policy, Monica Bozinovska. Kim was initially not optimistic about receiving a prompt reply from the government, even from a small country like Macedonia. Kim heard from Monica the very next day. She connected NDSAN with Monica and the search for an adoptive family began immediately. There was no luck in Macedonia trying to find a family willing and able to care for a child of Mario’s needs. In America Stephanie was able to locate three prospective families interested in Mario.

Kim saying goodbye

“We were so thankful Kim and the International Children’s Heart Foundation were at the right place at the right time,” said Stephanie. “And we appreciated Kim contacting us to identify families for Mario. And great news! One of our families has been identified, and if all clearances go through, they will be his forever family!”

This family Stephanie found through her registry remarkably has experience having adopted another baby with a heart defect and Down syndrome. (they will remain anonymous during the clearance process) Mario will be a perfect fit and a beautiful addition!

Mario continued to receive care in the ICU. The Babyheart volunteers brought clothing and formula up until his recent discharge and return to the orphanage. Monica is now working directly with the family to complete the international adoption process which, if all goes well, usually takes about three months. In this case the mechanisms of bureaucracy moved rather swiftly. Hopefully soon Mario will be with a loving family in the USA. ICHF Clinical Educator/ Nurse Coordinator, Frank Molloy teases Kim by calling her a “serial adopter,” for the number of children she’s adopted. She has adopted 3, ages 6, 5, and 3 and gave birth to one of her own. Her maternal instincts cannot be turned off and her large heart meant to care for children can’t be stopped. That is why she is a Babyheart volunteer traveling the world, attending up to 4 missions every year, and is at the very heart of how ICHF is able save lives, sometimes twice!

The National Down Syndrome Adoption Network maintains a registry of 200 families that are ready to adopt a child with Down syndrome. You can learn more about the NDSAN at www.ndsan.org and www.facebook.com/dsadoption.

 

Charles Tillman Supports ICHF’s Mission

All Pro Cornerback for the Chicago Bears, Charles Tillman, has recently offered his support for congenital heart defect awareness by appearing with Dr. William Novick in a PSA. Shot in March of 2013 the PSA is due to be released later in 2013. ICHF is thankful for such great supporters as Charles Tillman! Read the full story here!

http://charlestillman.org/news_events.php?nID=96

A Flat World, Full Hearts….Facebook, Globalization and Technology come together to Mend Baby’s Hearts

ICHF receives thousands of requests for assistance from parents of children with congenital heart defects all over the world.  Babyheart Volunteer OR Nurse, Becca Davenport, had the opportunity to sit with one of these parents and hear her inspirational story of how a group of people from different parts of the world came together to save her child.

Last October, we received a request from Corazones Guerreros Unidos (Heart Warriors United), a Facebook support group for Latin American families of children with congenital heart defects.  They had a mother in Ecuador whose two year old daughter was given little to no chance of living because of her multiple heart defects. When Paula was born, she suffered from a small heart murmur.  A few months later, Paula’s parents were informed that the heart murmur was even more pronounced and that their baby’s blue-tinged skin color was a sign of low-oxygenated blood. Paula would need an echocardiogram in order to determine her condition. After an agonizing wait, the echocardiogram result’s arrived. Unfortunately, they revealed that Paula suffered from multiple heart defects, several holes in the septum of her heart, and consequently pulmonary hypertension. In the United States these defects are fairly easy to treat if detected by doctors early enough, and subsequently done when the baby is very small. However, in Ecuador there are no resources for children to undergo the necessary cardiac surgery to fix these issues, and thus the doctors treating Paula had nothing positive to tell her parents, only that there was no hope for their daughter.

Paula’s mother was especially distraught to hear that their child’s doctors had nothing to offer them, and it was at this time that she decided to take matters into her own hands. Paula’s parents invested many long hours pouring over the internet, desperate to find someone who could help the young girl. It was a few months after the search that the Facebook support group for Latin American families heard of ICHF. They were astounded to find a non-profit organization that performs life-saving cardiac surgeries all over the world, and even in their country of Ecuador! With the help of the friend from the group as a translator, Paula’s parents were able to communicate with the ICHF, and they were nothing short of persistent, as they knew this might be the only organization able to save their baby’s life.

After reviewing Paula’s medical records, Paula’s family was advised to bring their daughter to the Hospital del Nino Dr. Francisco de Ycaza Bustamante for our next Babyheart mission to Guayaquil, Ecuador. Two months after initially contacting the International Children’s Heart Foundation, Paula and her family undertook the 7 hour trek (via bus) to Guayaquil, Ecuador, where surgeons would be able to fix their baby’s heart. At last, the little girl received her life-saving heart surgery, courtesy of ICHF and the volunteers that make it possible. Surgeons repaired the child’s atrial septal defect and multiple ventricular septal defects (holes in the septum of the inner heart chambers). Two days in the ICU, a few more up on the recovery floor, and Paula was well on her way to healthy new start on life.

Paula’s mother was in tears at the end of the interview. She later said that she was not able to communicate in words the magnitude of the International Children’s Heart Foundation impact on her family’s life. She says that she feels forever indebted to the organization, and the medical professionals who have been able to save her baby’s life. Thank you to the donors and supporters, even if she will never be able to thank them in person.

En español: Un mundo plano, Corazones completo …. Facebook, la globalización y la tecnología se unen para reparar los corazones del bebé

ICHF recibe miles de solicitudes de asistencia de los padres de niños con defectos congénitos del corazón en todo el mundo. Voluntarios Babyheart  OR enfermera, Becca Davenport, tuvo la oportunidad de sentarse con uno de estos padres y escuchar su historia inspiradora de cómo un grupo de personas de diferentes partes del mundo se unieron para salvar a su hijo.

En octubre pasado, recibimos una solicitud de Guerreros Corazones Unidos, un grupo de apoyo de Facebook para las familias latinoamericanas de niños con defectos congénitos del corazón. Tenían una madre en Ecuador cuyas dos años mi hija se le dio poca o ninguna posibilidad de vivir a causa de sus múltiples defectos cardiacos. Cuando Paula nació, sufrió de un pequeño soplo en el corazón. Unos meses más tarde, los padres de Paula fueron informados de que el soplo del corazón es aún más pronunciado y que su bebé azul teñido de color de la piel es un signo de baja oxigenada sangre. Paula necesitaría un ecocardiograma para determinar su estado. Después de una angustiosa espera, el resultado ecocardiograma ha llegado. Por desgracia, reveló que Paula sufría de múltiples defectos cardiacos, varios agujeros en el tabique de su corazón y la hipertensión pulmonar en consecuencia. En los Estados Unidos estos defectos son bastante fáciles de tratar si se detecta a tiempo por los médicos, y posteriormente se realiza cuando el bebé es muy pequeño. Sin embargo, en Ecuador no hay recursos para que los niños se someten a la cirugía cardíaca sea necesaria para solucionar estos problemas, por lo que los médicos que tratan a Paula tenía nada positivo que decir a sus padres, sólo que no había esperanza para su hija.

La madre de Paula fue especialmente consternado al saber que los médicos de su hijo no tenía nada que ofrecer, y fue en ese momento que decidió tomar el asunto en sus propias manos. Los padres de Paula invertido muchas horas que vierten sobre el Internet, desesperado por encontrar a alguien que pudiera ayudar a la joven. Fue unos meses después de la búsqueda que el grupo de apoyo de Facebook para las familias latinoamericanas oído hablar de ICHF. Ellos fueron sorprendidos al encontrar una organización sin fines de lucro que lleva a cabo para salvar vidas cirugías cardiacas en todo el mundo, e incluso en su país de Ecuador! Con la ayuda del amigo del grupo como un traductor, los padres de Paula fueron capaces de comunicarse con el ICHF, y eran nada menos persistente, ya que sabían que esto podría ser la única organización capaz de ahorrar la vida de su bebé.

Después de revisar los registros médicos de Paula, la familia de Paula se aconseja llevar a su hija al Hospital del Niño Dr. Francisco de Ycaza Bustamante para nuestra misión Babyheart junto a Guayaquil, Ecuador. Dos meses después de que inicialmente contacto con International Children’s Heart Foundation, Paula y su familia emprendieron la caminata horas 7 (en autobús) a Guayaquil, Ecuador, donde los cirujanos sería capaz de solucionar el corazón de su bebé. Por fin, la niña recibió su vida para salvar la cirugía cardiaca, cortesía de ICHF y los voluntarios que lo hacen posible. Los cirujanos repararon el niño defecto del tabique auricular y múltiples defectos septales ventriculares (agujeros en el septo de las cámaras del corazón interiores). Dos días en la UCI, un poco más arriba de la planta de recuperación y Paula estaba bien en su manera de nuevo comienzo saludable en la vida.

La madre de Paula estaba llorando al final de la entrevista. Más tarde dijo que ella no era capaz de comunicarse con palabras la magnitud del impacto International Children’s Heart Foundation en la vida de su familia. Ella dice que ella se siente siempre en deuda con la organización, y los profesionales médicos que han sido capaces de salvar la vida de su bebé. Gracias a los donantes y simpatizantes, aunque ella nunca será capaz de darles las gracias en persona.

Spotlight – Basra, Iraq

Little Mohammed Bakir is 6 years old from Basra who loves to collect and play with toy race cars. Although Mohammed is a resilient child, he suffers from a complex congenital heart disease known as Tetralogy of Fallot. He received a life-saving corrective surgery from our Babyheart team. He smiled the whole way through recovery!

And We’re Walking…

Colette and Almotasim are walking

Almotasim’s cousin told us that the patient was an active boy. Colette, the Canadian ICU nurse, assured him that the 12 year old was about to be a lot more active.

At about eight thirty the previous evening, Almotasim had come up to the ICU from surgery with the usual array of kit and tubing snaking out of his chest and throat and was extubated in short order by the night shift. This was followed by a thankfully uneventful night.

A crucial part of the training the ICHF provides its hosts goes beyond immediate issues like, Exactly how does one repair an ASD? And Just what does extubate mean and how or why is it done? Other, less obvious details – like how to manage patient lists to keep the required number of beds in the ICU open – are also important, even crucial. To perform four complex surgeries that will likely require long post-op stays in the ICU, will create a bottleneck with the limited beds available for the next day’s patients. These are the sorts of management details that can often make the difference in a successful program.

Nine days into the Benghazi mission, after a few surprises and a one-day break from surgery, the ICU was very full. So it was with great relief, both to the ICHF staff and, presumably to Almotasim, that he was ready to leave for the pediatric ward after 20 hours. Which is the goal for ICHF pioneered Fast-Track Recovery program. It is a hard and fast rule of Fast Track that no patient who could walk into the hospital leaves the ICU under anything but his own steam. If a child needs to be carried out, he isn’t ready.

The boy was still dazed from his ordeal, granted, but he got out of bed and wasn’t particularly interested in getting back in. He and Colette took a walk down the long hallway and back, at which point he picked up that he was being transferred out of the ICU. Which in and of itself was welcome news, but he grew concerned about the modest amount of swag he’d accumulated. Could he take it with him?

The ICHF nurses traditionally pack small treats for the children: coloring books, blow-ticklers, small toys for their charges. Lindy, a South African born perfusionist working in Holland, brought a bag of stuffed animals with her. Almotasim had grown attached to his lion, and who can blame him? Once he’d cleared up the matter of taking his animal up to the ward, and facing the prospect of getting back into bed, the boy opted for another walk. Then he said goodbye to the other 12 year old in the ICU, with whom he’d made friends.

He went up about mid afternoon, where his cousin walked with us up to the pediatric ward – decorated with Disney characters and other American cartoons – where his parents and little brother were waiting. Almotasim was pleased to be getting out of the ICU, and a little less pleased to be getting plopped into another bed – but if it had to happen, at least he was going to have a decent roommate. He asked about getting his friend sent up to the neighboring bed. Colette said she talk to someone about it.

So what does the future hold for our friend Almotasim? He’s an active kid with a strong heart; he’s loyal to his friends – even the stuffed ones – and has the good sense stay in bed even when he doesn’t feel like it. He seems to ask for what he wants in life, and is a hair stubborn about it. Well, apart from aggravating his parents for the next few years, he’s going to be just fine.

Richard Murff

Benghazi, Libya

 

Mission Statement

The mission of the International Children’s Heart Foundation (ICHF) is to bring the skills, technology and knowledge to cure and care for children with congenital heart disease in developing nations.  ICHF does this regardless of country of origin, race, religion or gender. Our goal is to make the need for ICHF obsolete. We work toward this goal through our medical mission trips, where we operate on children and educate local healthcare professionals.

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