Blog : congenital heart defects

Cardiac Alliance Begins Pediatric Cardiac Program in Western Libya

“’In Libya, there are several thousand children that need heart surgery, including hundreds of new-borns’, says Dr. Novick. That is why, with the support of the Presidency Council and the UN’s World Health Organization, Dr. Novick has launched a one-year national program, hoping to treat more than 400 Libyan children’s hearts.”

Read more in this article featuring Cardiac Alliance’s work in Libya, by United Nations journalist Abel Kavanagh.

 

UNSMIL/Abel Kavanagh

Cardiac Alliance returns to Ecuador

 

With our trip sponsors With Every Heartbeat, The Fialeny Foundation

Novick Cardiac Alliance worked at Hospital del Nino’s Dr. Francisco Ycaza Bustamante in Guayaquil, Ecuador April 28 – May 12, 2018. This was the first time our team returned to Hospital del Nino since 2014. This trip was made possible by the generous donations from our partners “With Every Heartbeat, the Fialeny Foundation” and support from Ecuadorian charity “Fundacion El Cielo Para Los Ninos.”  Our team consisted of 17 medical volunteers from 12 different centers in the USA and Argentina. 

 

Over the two week trip, NCA Cardiologist Dr Mark Gellat evaluated nearly 70 children, performing echocardiograms and assessing these children for heart defects. Led by NCA pediatric heart surgeon Dr Marcelo Cardarelli, fifteen children received life-saving heart surgery in 8 days of operation. We were pleased to discover that the local team in Guayaquil had been continuing their education and teaching new staff skills to become more competent in pediatric cardiac care and surgery. The local surgeon Dr Hernan Montero has been operating in the absence of visiting teams and the ICU has been led by Venezuelan Intensivist Ricardo Briceno. Each morning during patient rounds, Dr Briceno quizzes nurses and new doctors about a specific defect or complication in order to expand their critical thinking skills.

The ICU team was led by PICU nurse educators Farzana Shah and Roslyn Rivera. Our ICU physicians and nurses provided 24 hour care for these children before and after surgery the entire two weeks. Many of the children were discharged from the hospital within 48 hours of surgery. The majority of the children we operated during this trip were between 5-12 years old, with simple heart defects that require surgery in order for them to survive into adulthood. These children have been on a waiting list for surgery for several years, but there are not enough surgeons in Ecuador to provide surgery. The babies born with more complex heart defects are often not as lucky. Complex heart defects require early intervention for babies to survive to age one. Our trip to Guayaquil helped enhance the medical skills of the surgeons, doctors, and nurses so they can continue to provide treatment for children with heart disease in their country. 

Milan is a baby with a complex heart defect that requires immediate surgery to survive.

For four months, Milan’s mother watched her baby turned dark blue whenever he would cry. Several times, she took him to the doctor in the village where they live, but the doctor would say that Milan would “grow out of it.” Searching for answers, Milan’s family brought him to the pay-clinic in Guayaquil. There the doctors told her he had a serious problem with his heart and he needed to see the cardiologist at the Bustamante Children’s Hospital. As if by fate, the next day, NCA cardiologist Dr Gellat saw Milan. Just from seeing his blue pale appearance, Dr Gellat knew immediately that Milan did indeed have a complex heart defect. The echocardiogram showed that Milan had pulmonary atresia, meaning blood was not flowing the normal way into his lungs to receive oxygen. His blue color was from severe lack of oxygenated blood. Our team discussed a plan and Milan received surgery to create a pathway for blood to flow to his lungs. 

Milan had a difficult recovery after his surgery, but was doing very well when our team left the country. We have received updates from Milan’s parents that is now home and happily growing. His parents were immensely happy to see their baby boy finally looking well.

It’s babies like Milan that remind us how desperately advanced pediatric cardiac care is needed in developing countries. Our teams strive to educate local teams about pediatric cardiology so that babies like Milan can be properly diagnosed and treated early, and given a chance to survive. 

Giving Narges The Gift of Time

9 year old Narges was born in Iraq with a severe heart defect.

When Narges was an infant, her mother noticed  she would become blue when eating or crying. She took her to several doctors throughout Iraq, but nobody could give them any answers. Finally a doctor told them that Narges had a heart defect, but nothing could be done in Iraq to help her. They were encouraged to find help outside the country.

At one year of age, Narges’ parents used all their money to take her to India for medical treatment. Here she was finally given a proper diagnosis. She was born with a complex heart defect, single ventricle with mitral atresia. Even in India, Narges was deemed inoperable.

For years, her family watched their beautiful daughter remain blue and ill, which progressively worsened over the years. Narges’ parents took her to several hospitals in Iraq, hoping that someone could help their daughter. Through the strife of war in their country, Narges’ mother never lost hope. She persevered in her search for a heart surgeon that would take her daughter’s case. Finally, she saw an advertisement from Al-Amal Hospital in Nasiriyah Iraq that announced the arrival of an International pediatric cardiac team that was offering heart surgeries.

Dr Novick met Narges in clinic at Al-Amal Hospital in October 2017. At that time, Narges’ blood oxygen levels were only 70%. Her heart was severely enlarged and the improper circulation of blood inside her heart had been causing lung damage for years. Dr Novick prescribed medication to help lessen some of the damage and requested that Narges return to the hospital for evaluation when our team returned the following month.

In November, Narges and her family returned to Al-Amal Hospital to met with our team. Narges’ heart was still severely enlarged and her only option was a palliative surgery that would prevent further lung damage. The hope was that this surgery would improve her quality of life. Dr Humberto Rodriguez performed this surgery and Narges recovered quickly in the ICU. Our team was impressed by her determination, asking to get out of bed the day after her surgery. She wanted to get cleaned up and loved having her hair brushed and braided by nurse Emily. We witnessed the fight inside this young girl, and we understood where she gained her strength from, her mother.

Narges’ mother emotionally described how difficult it was to watch her daughter struggle to breathe, and how she fought to find proper treatment. Both of her parents really understood the severity of their Narges’ heart disease. They were so thankful to our team for offering her this chance to simply have more time in life.

Sometimes, we cannot completely repair a child’s heart, especially those children who have lived for many years with complex defects. This is why we aim to educate cardiologists and pediatricians to diagnose and plan treatment for these children when they are young. For now, Narges will continue to go to school and spend time with her family. This gift of time is what matters most to the families who are barely grasping at hope.

 

 

Artur from Ukraine: Fighting for His Life

Artur is was born a fighter.

Artur was born on the 1st of September in Luhansk, the easternmost city of Ukraine. Luhansk has been under the control of the separatist rebel group since 2014, and is known as “Luhansk People’s Republic.” This city was nearly destroyed by the war in 2014 and many public services are difficult to obtain, including quality care at hospitals.

When Artur was 5 days old, his mother noticed he was breathing very fast and turning blue. She took him to the hospital in Luhansk but the doctors were unable to give a definite diagnosis and sent him home. Weeks continued and Artur’s mother became more concerned with her baby’s blue color. Again she went to the hospital and after several tests, the doctor thought he noticed something wrong with Artur’s heart. Finally the doctor in Luhansk called the Kharkiv Cardiac Center. This doctor sent a photo of Artur’s chest x-ray to Kharkiv pediatric cardiac surgeon Olga Buchevna and she recommended Artur be transferred immediately to Kharkiv.

 

Upon his arrival at the hospital in Kharkiv, cardiologist Daria Kulikova performed a echocardiogram and diagnosed Artur with Transposition of the Great Arteries, plus a tiny ASD and tiny VSD. This heart defect usually must be repaired within two weeks of age, and Artur’s was very severe. He was not getting enough blood to his body or brain, with oxygen saturation levels barely 50%. His surgery would be complicated. Luckily our team arrived three days later and on October 9th, Artur received his life saving heart surgery. Kharkiv pediatric cardiac surgeon, Olga Buchevna, performed this surgery flawlessly with assistance from Cardiac Alliance surgeon Kathleen Fenton. Artur recovered quickly in the ICU and was drinking milk two days after surgery. His serious facial expressions proved to us that this little boy has a strong will to survive.

There are babies like Artur around the globe, fighting for their lives, waiting for medical assistance to mend their heart defects before it’s too late.

 

Cardiac Alliance’s collaboration in war-torn Benghazi brings sustainable healthcare to children

Reuters journalist Ayman al-Warfalli recently interviewed our team in Libya, where there are “more than 300 kids waiting for open heart surgery, maybe 400.” Cardiac Alliance strives to maintain our collaboration with the hospital in Benghazi to care for these children in need.

Read the Reuters article to learn about the desperate need for sustainable healthcare in Libya.

With your support, we can continue our education programs to save more children in countries like Libya.

Commitment to Sustainability

Commitment to Sustainability

 

Recognizing that congenital heart disease requires lifelong care, Novick Cardiac Alliance continues to return to our partner sites multiple times per year over several years, because of children like Ahmed.


Dr. Novick first met Ahmed in 2010, when he was 5 years old. Ahmed was born in Nasiriyah, Iraq with a complex heart defect. Similar to most tragic truths in the developing world, there were no doctors in Iraq that could help their son. Ahmed’s parents felt hopeless watching their little boy constantly out of breath and not gaining weight like their four other healthy children.
Then they learned that an American team was coming to the city of Sulaymaniyah in northern Iraq. Ahmed’s parents traveled over 10 hours by car in the hopes of finally giving their son a chance to receive the heart surgery he desperately needed. Dr. Novick performed Ahmed’s first surgery in August 2010 in Sulaymaniyah, alongside Iraqi surgeons. Ahmed recovered well after this surgery and was a healthy boy as he grew up in Nasiriyah. About a year ago, Ahmed began experiencing the same symptoms of heart failure, coughing a lot and often extremely tired. Now in 2015, there were Iraqi pediatric cardiac surgeons operating, but Ahmed’s condition was too complex for these novice Iraqi surgeons. Once again, Ahmed would have to wait for external aid. And once again, Dr. Novick came to the rescue.

Ahmed received a second chance at a healthy life when Novick Cardiac Alliance operated on him in Karbala, Iraq in January 2017. Ahmed was such a joyful boy to care for in the ICU. He was always in high spirits. His first time out of bed he danced and stomped around the ICU in pure joy to be alive. Every time we saw him on the ward, he wanted to tell us how well he was doing. Though we didn’t speak Arabic, we understood his fist in the air accompanied by a loud “roar” was his way of proving to us that his heart condition would not defeat him!

Children with congenital heart defects like Ahmed require continued follow up visits with a cardiologist. When a child is born with a broken heart, they can develop symptoms in the future, even if they’ve had surgery. Some children will need to have more than one surgery in their lifetime. This is why Novick Cardiac Alliance aims to educate the local medical team so that they can provide the necessary care for children like Ahmed.

You can help us to build sustainable health care solutions for children like Ahmed around the world.

Surgery and Beyond

Surgery and Beyond

The picture of a child with a healed heart is a simple expression of our purpose, however what is often more difficult to show is the ‘behind the scenes’ work we do that is vital to the success of our programs. At Cardiac Alliance we believe that by educating and collaborating with local healthcare teams, we can help to build sustainable pediatric cardiac care services that are capable of caring for hundreds of children with heart defects every year.

Happy child after surgery
Happy child after surgery

The surgery is fascinating and the children are cute but it is the collaboration with the local staff and the growth we see in their team that we, the Cardiac Alliance staff and volunteers find the most exciting.

Dr. Novick collaborating with team
Dr. Novick collaborating with team

Each trip begins with the arrival of the Cardiac Alliance team. On our recent trip to Macedonia, Frank Molloy our PICU Nurse Practitioner and Educator first walked our volunteer team through the surgical unit in the hospital and shared the local protocols. Frank could see many changes that had occurred in the 2 months since our last visit- better organization of supplies, two new nurses, the newly developed quick guide “cheat sheets” for the team to refer to, even new decorations in the Pediatric ICU!

Frank teaching Macedonian team
Frank teaching Macedonian team

With each patient, the Cardiac Alliance team makes sure that the local nurses and doctors are thoroughly involved. The local team in each site already has methods that they are used to and comfortable with and our international volunteers will have come with experience and new ideas to share. We believe that by encouraging the local team to walk through the problem and offer solutions themselves with the assistance of our team, we teach more than we could with a list of orders or a checklist.

Team members from Libya
Team members from LIbya

On our trips, time is rarely disposable so a lot of the learning is done hands on in the clinical setting though we often hold lectures and small workshops. The key to a successful trip is the development of professional relationships with the local team built on mutual respect, understanding and a common goal. We plan to visit each of our partner sites multiple times per year for several years and with time the local team becomes more independent and confident in their ability to manage the patients. This model of sustained, intermittent support has been very successful for us and now a number of our volunteers come from previously assisted sites.

Volunteers in hospital
Volunteers in hospital

At Cardiac Alliance we believe that every child matters but doing surgery on one child is not enough! By educating local healthcare professionals and empowering them to provide high quality care in their own region utilizing the available resources, we can ensure that the next hundred children (and the hundred after that) with heart disease have hope and access to the care they each deserve no matter where they are born. You can be a part of changing lives! Volunteer with us or Donate  today and help us fill the world with Happy hearts!

Roslyn’s Story

Roslyn’s Story

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Novick Cardiac Alliance PICU Nurse and Educator, Roslyn Rivera, BSN, RN remembers her experience with heart surgery as a child.

As a pediatric cardiac ICU nurse, I often find myself rocking crying babies just hours after their heart surgery, while I repeat the phrase “I know, I know…” in an attempt to calm them. I can honestly say I understand the pain and discomfort they feel with all the tubes and drains attached to their small bodies. I can say this, because I also have had open heart surgery to repair the congenital heart defects I was born with.

IMG_9231 (1)My story starts on a warm Southern California summer day when I was born in 1983. This was the day my parents learned that I had a heart murmur. I was born with a congenital heart defect called partial AV Canal. They were told the holes in my heart might close as I grew up, so surgery wasn’t necessary. But at the age of 3, I developed heart failure and had my first open heart surgery to repair my defect. My only memories from this surgery were of the times when I went to the playroom! It’s safe to say this is when I had my first thoughts of being a nurse when I grew up… This idea was made definite when I was 10 years old and had my second heart surgery. I noticed a faint scar on the chest of one of my nurses, and learned that she also had heart surgery. Hearing her story convinced me that I wanted to be in her shoes one day, as a nurse taking care of children after heart surgery.

IMG_9028Roslyn Age 10 - Hospital001From my hospitalizations as a child, I never recall feeling afraid. I believe this is because my nurses were always so caring, and talked or played with me to distract me from anything painful. I remember my pacing wires being pulled out of my chest. I remember the expressions of worry and fear on my parents faces and the kind nurses who comforted them. I trusted my nurses, and these memories of being a patient reverberate into my own nursing career.

I have never let my congenital heart defect hold me back in any way, in fact it has enhanced my life. I was fortunate enough to be born in a country where pediatric cardiac care was readily available, even in the early 1980s. This is why I travel to developing countries with medical teams providing heart surgery to children who would otherwise not receive care. I was that child in the hospital bed attached to wires and tubes, and now—as a nurse—I can truly relate to the children I care for. This has led me to continue my passion of helping children with heart disease in developing countries around the world.

 

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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!