Blog : Congenital Heart Disease

From West Africa to Lebanon – In Search of a Fix for a Broken Heart

There are thousands of children with undiagnosed heart defects waiting for someone to find them to save their lives. On our inaugural trip to Lebanon, Cardiac Alliance met a child who traveled from West Africa to southern Lebanon in search of a definite diagnosis and hopefully life-saving surgery. How was is that four-year-old Emmanuel, or E-man as his village calls him, who was so sick that he would sleep most of the day, could possibly travel across the entire continent of Africa?! This is a story of perseverance that emphasizes each person’s ability to help a child in need, even when the task seems dauntingly impossible.

Emmanuel was born in July 2013 in the small village of Garplay, Liberia. His mother Kuku describes his inability to eat as an infant, needing to take breaks to breathe rapidly and he didn’t walk until age two. His family was finally able to travel to Monrovia, the capitol of Liberia to find a specialist. Emmanuel was presumed to have hole in his heart, though there is no an echocardiogram machine anywhere in the country to actually check his heart. His symptoms of extreme difficulty breathing, keeping his oxygen levels high enough, and playing with his 4 siblings were tell-tale signs. He would often pass out for hours at a time while his family would gather around and pray over him until he came to.

E-man and Kuku in Liberia

Liberia was ravaged for 14 years during a civil war from 1989-2003. Because of this war, the country was left with no electricity or running water and very little medical care. While the country is now growing and improving slowly, the medical system is still very primitive in many areas. When it came to E-man, there were no services available to help him, the only way for him to get healing was to go out of Liberia. But that would cost money and with the majority of Liberians being subsistence farmers, including E-man’s parents, Emmanuel and Kuku, saving the money to get heart surgery in another country would be impossible. So they waited and prayed. For four years, E-man miraculously kept fighting; every time he saw a plane overhead, he would say, “My plane is coming to get me!”

Emily and Brian with children from E-man’s village in Liberia

This is where Emily and Brian from Florida, USA enter the picture. Emily and Brian work on the child sponsorship team for Light Evangelism Ministry and traveled to Liberia in March 2017. Emily describes meeting E-man for the first time, as “..heartbreaking. He was laying on a bench, gasping for air, and whimpering. His lips were blue. He didn’t even have the energy to sit up.” Emily and her organization committed right then and there to exhaust all efforts to get surgery for E-man.

They made dozens of phone calls, just stabbing in the dark, trying to find a hospital in America that would work pro bono to save this child. After months of trying, they finally found a hospital in Florida willing to do the surgery, but were quickly devastated when the American Embassy in Liberia told us they would not grant a medical visa for any reason.

Back to square one. After putting out a general plea on Facebook, one of Emily’s friends connected her with Elizabeth Novick, a founder of Novick Cardiac Alliance and wife of Dr. Bill Novick. Dr Novick accepted to repair E-man’s heart, as long as they could get him to any of the locations where Novick Cardiac Alliance was working. The first available country was Libya, but within days of travel, the visa fell through. Ukraine was next. But their hopes were quickly dashed as they found out E-man and Kuku would have to fly to Senegal to get a visa for Ukraine. The extra travel would be impossible for E-man in his condition and the money for the extra flights was more than anyone could afford.

After some research, Emily discovered that Lebanon had an embassy in Monrovia, Liberia’s capital city! Now, just three weeks before Cardiac Alliance was scheduled to be in Lebanon, Emily and her organization were pressed for time to raise the money to fly E-man across the continent.

On October 11, Kuku called Emily. E-man had had a horrible couple of days. He wasn’t eating. He was sleeping a lot and was not able to get off the floor. He was so very sick. Again Emily took to Facebook and posted a video explaining the call she’d just received. The money started to pour in, and in just one day, raised more than the amount they needed! They were fully funded, and E-man would have his surgery!

One more hurdle. The Visas. Emmanuel and Kuku went to the Embassy and were told the man who wrote the letter from the Lebanese hospital would have to call the Embassy to confirm the validity of the case. From America, Emily called Rashaya Governmental Hospital and was connected with the hospital medical director Dr. Yasser Ammar. Dr. Ammar called the Embassy, and E-man and Kuku were immediately granted their visas… just 5 minutes before the Embassy was closing for the day!

No more hurdles. No more mountains. E-man’s surgery was on its way.

Emmanuel arrived at Rashaya Governmental Hospital in southern Lebanon on October 23, and our team performed an echocardiogram and officially diagnosed E-man with tetralogy of fallot. This diagnosis explained why E-man would often squat when playing with his siblings, his body’s attempt to get more oxygen. His surgery was scheduled immediately.

On October 25, Emmanuel received his healing surgery and we know he has a beautiful future ahead of him. It is people as determined as Emily that can help us save these children. This story brings us encouragement that individual people in the world have the power to bring awareness and treatment for the number one birth defect, congenital heart defects.

We all have hopes that E-man will provide great change in his home country of Liberia one day!

Perfusion Without Borders Scholarship Winner

Each year, the American Society of Extracorporeal Technology offers a scholarship to one Perfusion student to travel on a medical mission trip with an organization of their choice. This year’s winner is perfusion student Kim Morris and she will be traveling with Novick Cardiac Alliance to Ukraine early next year.

Kim Morris, Perfusion Student, USA

Kim moved across the United States from Alaska to New York to pursue education in perfusion. From her experience, she has learned that “a successful perfusionist is reliant on gaining the trust of a room full of people that may come from completely different backgrounds. You treat your patient with your equipment and knowledge, but you also treat the surgeon and a room full of professionals with careful communication and a calm demeanor to ease a stressful situation.”

Several years ago, Kim was a medical volunteer in Ghana and from that experience realized she aspired to gain more personal knowledge to more directly help people in need on her next volunteer trip. Becoming a perfusionist was her answer. She now is feeling more qualified to utilize her skills to directly assist those in developing countries. Kim is excited to join Novick Cardiac Alliance as a perfusion student, honestly stating, “I’ve learned to participate in a highly skilled team to give a patient a permanent, life changing surgery.”

Kim volunteering in Ghana.

We look forward to having Kim join our team as a perfusion student in Ukraine!

Novick Cardiac Alliance Featured on ShareAmerica

Cardiac Alliance has been featured on ShareAmerica, a platform produced by the US Department of State. Our story has been shared to all the US Embassies worldwide. This particular story can be translated into seven different languages. Read the article on ShareAmerica to learn more about our life-saving work in war-torn areas.

Witnessing Sustainability in Libya

Two brothers, Four heart defects.

In 2012, we met Abdul, a Libyan boy who was born with four heart defects, called Tetralogy of Fallot. Dr Kathleen Fenton operated on Abdul alongside Libyan pediatric cardiac surgeon Dr Wejdan Abou Amer. Because his heart defects were diagnosed late, Abdul was very sick following his surgery and remained in the ICU for many days. Our team was scheduled to leave the country, but Dr Fenton changed her flight to stay and help the Libyan team care for Abdul. 

Abdul, 2012

In June, our team returned to Benghazi and met Abdul’s little brother Mohammed. Mohammed has also been diagnosed with Tetralogy of Fallot. His parents were devastated to learn their second son also had a life threatening heart defect. It is “life threatening” because he lives in war-torn Libya with limited basic health care available, let alone pediatric heart surgery. 

Mohammed, 2017

Since our team has been visiting Libya and educating the local Libyan medical professionals for several years, we are witnessing the magic our work accomplishes. Mohammed needs a type of surgical procedure that the local Libyan surgeon Dr Wejdan can now perform on her own! Dr Fenton collaborated with the Libyan team and determined that Mohammed’s surgery can be performed by Dr Wejdan after our team leaves the country. From our continued teaching, she has developed the skills to do this, and the ICU team has the skills necessary to care for a patient like Mohammed. 

Dr Wejdan and Dr Fenton operating in Libya.

Without our continued perseverance to travel to Libya, children like Mohammed and his brother Abdul would not survive. There would be no miraculous story to tell. 

And by the way, Abdul is now 6 years old and attending school! 

Meet Narjis, our first patient of 2017!

Meet Narjis, our first patient of 2017!

Narjis was born in Baghdad, Iraq in October 2016. When she was about two weeks old, her parents Akar and Nor Maseer noticed she was breathing fast. They took her to the doctor and an echocardiogram showed she had two holes in her heart, an atrial septal defect and ventricular septal defect. The doctor gave her medicines and told the family to return in 1 week. After this week, Narjis did not improve and the doctor said she needed surgery. Unfortunately, there is no hospital or heart surgeon available for babies in Iraq, so doctors advised Narjis’ parents to take her outside Iraq.

Advocating for his daughter, Narjis’ father Akar found a new doctor in Baghdad, but this doctor said her lung pressures were too high and surgery would now be impossible. Not losing hope, Akar found yet another doctor for his daughter, but still the same answer: his family must travel outside of Iraq for her surgery, and if they didn’t she may not survive until her 1st birthday. At two months old, Narjis barely weighed as much as a newborn baby because of her heart defect.

Still searching everywhere for a better solution, Narjis’ father saw an advertisement on Facebook from Al Kafeel Super Specialty Hospital in Karbala with the news that Dr Novick and his team would be coming to provide heart surgeries for children. Narjis’ parents packed their bags and drove to Karbala to meet our cardiologist on the first day of our arrival. Her heart surgery was scheduled for the next day.

Now 3 months old, Narjis received her life-saving heart surgery to close those two large holes on January 16th. She recovered quickly and was back in her mother’s arms on the ward within two days. Narjis’s parents are very thankful that their sweet little daughter is healing and eating better. Just two weeks ago they were fearful they may lose their newborn baby, and now they see her future is bright.

A Mother’s Wish

A Mother’s Wish

Brenda Kingsley is a mother who volunteers with Cardiac Alliance- here she shares her story with us.

Mother’s Day is very special to me, I have been blessed with five children and each of them have changed my life greatly. In 2004, I was pregnant with my fourth child and had gone in for a routine ultrasound. I was excited to see the baby, hear its heartbeat and find out whether it was a boy or girl.  However, the news my husband and I received wasn’t the exciting news that I thought we’d get. We were told that there was something wrong with our baby’s heart; hearing that was devastating. At the time, we lived in Alaska and were told that our baby would need to be born in Oregon in order to get the medical care she would need. We of course wanted the best care for this baby; we’d go anywhere and do anything to make that happen.

Hannah Spring 2009 049

My daughter, Hannah, was born in Portland, Oregon at 35 ½ weeks. She had her first open heart surgery at 8 days old, had her second surgery at 6 months old and she had her third surgery at 4 years old.  Our fear and anxiety grew with each surgery, not knowing if she would survive. Hannah was so tiny and the surgeries she underwent were tremendous. Seeing her after surgery with all the tubes and wires was heartbreaking.  When Hannah was a baby, she didn’t feed well, she slept more than the average healthy baby and she would turn a dusky blue color when she cried.  As Hannah grew, she couldn’t keep up with the other kids her age, her face always had a blue tinge, she easily got sick and she was a lot smaller than other kids her age. Watching my daughter struggle to survive on a day to day basis was hard; I smiled like everything was fine, but on the inside I was dying.  As a mom, my priority is to comfort my kids, protect them from as much as I can and whenever I see one of my children hurting, it hurts me down to my very core.  I would do anything for my children, they are my world. Living in the United States, I was able to find the medical care that Hannah needed and I am so thankful for the doctors and nurses who took care of my baby. This was the best gift that anyone could have ever given me.

Munam's mother worried

As this Mother’s Day quickly approaches, I want to challenge you to think outside the typical Mother’s Day gift and give a gift of hope to a mother who doesn’t have the resources that I had for my child. More than 90% of the world’s children born with congenital heart defects do not have access to life-saving care. These mothers are unable to provide the care for their children as the financial burden of traveling to America or Western Europe for the proper medical care is more than they can bare and the local doctors do not have the proper training to care for the child. Imagine being a mom in an underprivileged country, watching your sweet baby struggle to survive and knowing that the proper medical care is not available. The pain and anguish of that must be unbearable.  These are moms who love their children and want to give them the very best. Moms who want to see their kids grow up to be strong and healthy.  This Mother’s Day, consider giving a mother hope.  Hope that her child will get the medical care that they need. Imagine how life changing that hope would be to the mother, the family and to that precious child.

Munam and his mom after surgery

Help us make this Mother’s Day truly special for many families around the world by supporting Novick Cardiac Alliance. Our team of highly trained doctors and nurses are working to establish pediatric cardiac care units all over the world, where many children can be properly diagnosed, treated and cared for after surgery. Your generous donations will make this life-saving care possible for many children. Do something special this Mother’s Day and give a gift of hope!Matvey and mother

Dilya Remembers her Surgery

Dilya Remembers her Surgery

Dilya Cleveland was 11 years old when she first met Dr Novick and his team – 20 years later she has shared her story with us.

Dilya and Dr No

Although my surgery was performed in September 21, 1995, my mind holds strong memories and that experience will never be forgotten. I was visiting my local cardiologist since I can remember myself and I will never forget the day when my local doctor informed my parents and me that without the surgery I have only 6 months to live. It was July 1995. My parents were trying to gather money and possibly take me to Europe for the surgery, but financial situation was difficult and, honestly, I don’t think that it would’ve been possible. But God was looking over me and at the end of July my local cardiologist told us that the team of american doctors will be coming to Kazakhstan and performing free of charge cardiac surgeries. I was chosen to be one of their patients. My parents, all my relatives and I were absolutely thrilled with the news! Dilya as a child

Dr. No and his team arrived in beginning of September. I remember first time I saw Dr. No- he seemed so tall and his hands were so big compare to mine. He came in to the ward to evaluate a little baby with TOF and I was wondered how can a man with big hands can perform surgeries on those little babies – it seemed magical and almost impossible to an eleven year old girl. Dr. No was a wizard. He made impossible possible. And not only in the eyes of a child, but also in the eyes of my parents. Till this day my mom remembers how Dr. Novick was reassuring her that I will be able to live a normal life and not to worry about my heart defect any longer. And he was right, he kept his promise!

Dilya watching surgery

 The surgery and the whole experience not only gave me a second chance in life, but also gave me a purpose in life and helped me choose my future career. After the surgery I was interested in congenital heart defects, surgeries and medicine in general. Shortly after the surgery I started reading medical books and journals, and made a firm decision to pursue a career in the medical field. However, I had to walk different paths before I finally graduated as RN. Shortly after graduation I accepted a position as Peds ICU RN. While I was in nursing school, God gave me another gift – the ability to reconnect with Dr. Novick and become a volunteer on his team.

Dilya volunteering

 There will be never enough words to say thank you to Dr. Novick and his team for saving my life, the only way I can express my gratitude is to serve and help people in need through my job and volunteering.

You can help too- Donate to Cardiac Alliance or Volunteer with us and help more children like Dilya become whatever they want to be!

Meet Our Cardiac Alliance!

Meet Our Cardiac Alliance!

Dear Friends,

Dr No at a child's bedI am writing to introduce you to a new non-profit charity founded by me and those who wanted to further my dream to help children around the globe with congenital heart disease.  After 22 years of operating on 7500 children in 32 countries with International Children’s Heart Foundation, a significant number of us have left and continued the original vision by founding the William Novick Global Cardiac Alliance (NCA).  NCA was founded in October 2014 by 18 individuals who wanted to continue the mission of operating on children with heart disease, educating our colleagues in developing nations and above all helping to foster sustainable solutions to pediatric cardiac care. We are, by choice, non-sectarian in our approach so that all may receive care or volunteer to help.
Happy Baby with heart picture
The necessity of founding NCA did not slow us down but encouraged us to continue to be better and to work harder to reach our goal.  We have over 30 Cardiac Alliance trips scheduled for 2015 and will be adding more countries in coming years. We aim to provide comprehensive care to all children with congenital or acquired heart disease regardless of gender, ethnicity, religion, political ideation, genetic factors or economic means.

YOU are our “heart”, the pumping force of our organization without YOU we would not be able to extend our services around the world. With this letter I am extending an invitation to all of you to join us in our endeavors to mend little hearts through volunteering, donating, or spreading the word in your community.

Warm Regards from our Founding Board:

Faces no logo

William Novick, MD MS;  Brian Forsberg, MPH CCP; David Wieduwilt, BME CE; Elizabeth Novick, BSN, RN; Eugene Suslin, MD; Farzana Shah, BSN, RN; Frank Molloy, MSc, RN; Humberto Rodriguez, MD; Igor Polivenok, MD PhD; Jean Towne; Karen Bowtell, PGDip, RN; Kathleen Fenton, MD;  Marcelo Cardarelli, MD MPH; Martina Pavanic, BSN, RN; Pavel Shauchenka, MD; Siarhei Liauchonak, MD; Sri Rao, MD; Stacey Marr, MSc, RN

Team in Libya

 

 

 

A Journey for Hijar

A Journey for Hijar

We had just begun our trip in Iraq and were in the ICU setting up and waiting for our very first patient when Dr Novick arrived with one of the cutest children we have ever seen. Her name is Hijar and she is one year old. Hijar was born with a hole between the top chambers of her heart and for most children this is a condition that will not need to be treated until adulthood. Hijar’s family knew she had a heart problem but that she could wait a few years before she needed an operation.

Hijar pre- op

 

Then one morning Hijar’s mother noticed that her baby was ‘tired’ and not really moving much and then Hijar collapsed- her family rushed her to a hospital in Basra and found that her heart was beating very slowly and she needed an operation immediately to save her life. They were told to take her to Baghdad but with the fighting so near to that city the family were afraid and then someone told them that there was a foreign team of heart specialists in Nasiriyah who might help them. The family immediately drove the 3 hours south and asked the hospital to let them see the foreign team.

The ICU

Hijar was admitted straight to the ICU where we stabilised her and operated on her the same day- we inserted a pacemaker to increase her heart rate and while we were there we also fixed her other heart problem so she never had to have another operation again! Hijar left the ICU the next day and went home with her parents just 3 days later.

Hijar after surgery

There is no hospital in the south of Iraq that is capable of operating on young children or babies independantly and for most families the idea of travelling North, nearer to the ISIS held areas is frightening. For Hijar this story has a happy ending but there are thousands of young children in Iraq who need our help.

You can Help us to continue our work in Iraq and be in the right place at the right time for more children like Hijar. Donate today or Volunteer with us and change a life.

A Dedication

A Dedication

In December 2005 Dr Novick and a team of professionals made the first of what would be 17 surgical trips to the Armed forces institute of Cardiology (AFIC) Rawalpindi, Pakistan. As with any new endeavor we had high hopes for this centre but none of us could have imagined what they would actually achieve.

The PICU

Within 2 years they had doubled the number of successful surgeries they were performing on children in their region and now – 10 years later – they offer a state of the art facility and standard of care that is comparable to institutions in Europe and the United States. Last year more than 700 children received treatment at this site and the team help to facilitate training to other hospitals in the region.

Pakistan Collage of photos

This year Dr Novick’s team was invited back to work at AFIC as they want to improve the care they provide to more complex children. While we were there AFIC held a dedication ceremony for the new Pediatric Cardiac Surgery facility. To our great surprise this facitlity was dedicated to Dr Novick- it was a very humbling experience for us all.

The dedication from AFIC

Dr Novick said:

Never in my wildest dreams did I think I would, have a pediatric cardiac surgical wing dedicated to me and my colleagues- at least not in my lifetime!!. Well it has happened! Our work in Pakistan was rewarded with just such a dedication. I remember drawing the plans on a napkin between cases with the Surgeon General of Pakistan in 2006 and now I am standing here! Thank you to all of our colleagues and friends at AFIC for this great honour it is humbling beyond words.

Dedication with AfzalJoin us this year as we visit more new sites and continue to make Happy Hearts around the world.