Blog : Dr. Novick

The Ugly Duckling and the Swan

The Ugly Duckling and the Swan

I am sure you remember the childhood story of the Ugly Duckling who was constantly reminded of his physical shortcomings as he grew up. Children with single ventricle defects remind me of this story of the Ugly duckling who grows up to be a beautiful swan.Julia at work

Unlike most of us, who have two ventricles, children with one ventricle spend a great deal of their childhood as in-patients in hospitals or visiting doctors in out-patient clinics. They are poked routinely for blood tests, examined constantly for the functionality of the one pumping chamber they have and questioned by other children as to why they can’t play the normal childhood games . Against this nearly continuous barrage of unwanted attention these children must grow up, go through the normal milestones all kids attain and become adults, with little knowledge of how long they have been granted time on this earth.

We don’t know how long these single ventricle operations will keep children alive because the operation is only 43 years old itself and has undergone so many modifications that much of the previous research experience is now meaningless. We do know that the latest versions of the Fontan-Kreutzer Operation are keeping more people alive longer, but whether that will translate into a life-span on this earth that approaches normal is unknown at this time.So an uncertain future, harangued and harassed as children and told they are not the same as others, does this not sound like the Ugly Duckling?Julia in 1994

Twenty-one years ago in Kyiv, Ukraine there was a child of 7 years of age, who wore the label of single ventricle, or Ugly Duckling. Julia lived in a country where few Fontan procedures had ever been performed, and certainly not with success. The first picture, taken just after discharge from the ICU, does not reveal the Swan that she would become. As a young woman post Fontan she did not know she was supposed to continue in the Ugly Duckling role, she decided that since she had been given a second chance at life she would use every second to live life to her full capacity.Julia scuba diving

So our Ugly Duckling finished primary school and overtime the Swan began to emerge, first exceling in her advanced studies and then entering into a career that no Ugly Duckling could have imagined she became a successful Fashion Model. Traveling to far away sites for modeling shoots, what about a single ventricle scuba diving? Today she is considering the next career in her eyes, she wants to be a mother, and this is what reunited us 21 years later. She had developed an urge so powerful to meet the surgeon who had given her the opportunity for this second birthday and new life that she did not quit searching until she succeeded. I met this new Julia in Ukraine just last week.Dr No and Julia

Parents of children with single ventricle should celebrate the lives these children have and always remember that these ‘Ugly Ducklings’ can and do grow up to be magnificent Swans.Julia smiling

Dr. Novick’s Blog

Dr. Novick’s Blog

Blue Babies, Bombs and Bad Places

So what was it like to be the first American based pediatric cardiac team in Tehran, Iran since 1979?

Tehran at sunrise

Wonderful people, incredible hospitality, eager to learn new techniques and protocols for the care of their children with heart disease and guess what? Not one anti-American word spoken to us the entire trip, amazed? Shouldn’t be because people all over the world are the same, it is our governments that create the friction.

Fortunately we don’t deal with politics, we are Ambassadors of Good Will and we stick to that like glue.Surgery in Iran

One side note for all of you, we cannot seem to get away from Iraqi children. The mother in the photo is holding her 26 day old newborn who we performed an arterial switch operation on and as you can see the baby is fine. The mother is from Baghdad and she went to Nasiriyah to find our team and was told we were not there, but in Iran, so she came to Tehran to find us and have us operate on her child.Baby Misq and MotherImagine that, an Iraqi mother traveled to Iran to have an American team operate on her baby, this is the kind of diplomacy we love. We will be returning to Tehran in November, to do more work and to spread the diplomacy of Good Will!

Dr No

 

Children's Medical Centre Tehran

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 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.

 

Sasha’s Dream

Sasha’s Dream

We would like you to meet Aleksandra or ‘Sasha’ as she is known to her friends. Sasha is 14 years old and was born with heart disease and for 14 years that has been the most important fact in her life. Because Sasha was born in Russia she did not receive the treatment she needed when she was a baby. If Sasha had been born in the USA or Europe then she would have had surgery in infancy and may not even know she had a heart problem.

Sasha and heart Diagram

The disease that Sasha had is called Partial Anomolous Pulmonary Venous Drainage and this causes children to have poor exercise tolerance and frequent respiratory infections, affects the quality of their life and would lead to death in early adulthood if untreated. Although complex to operate on initially the corrective operation for this is easily taught, and very few children will with this problem will need any further surgery and can expect to live a normal life. The local Russian surgeon under the guidance and supervision of Dr Novick did Sasha’s operation himself and in the future other children like Sasha can be treated early in childhood.

Mary Ann teaching local nurse Nadia

 

At Cardiac Alliance we believe that teaching local healthcare teams to perform surgery and care for these complex children is just as important as performing lifesaving heart surgery ourselves. Sasha was one of 15 children who received an operation on the recent trip to Russia and clinical and educational support was provided to the local Russian team 24 hours a day. We plan to visit the same hospital 3 more times this year.

Cardiac Alliance Volunteers and Local Russian team

Sasha wants to be a doctor and until this year that was a dream that she did not think would come true. Sasha was lucky,  she had an operation, which completely healed her heart and now she is ready to experience life to the full.

Help us to make more children’s dreams possible: Volunteer with us or Donate today, You can make a real difference to children just like Sasha!

 

Volunteers Reflect On Their First Surgical Mission

Volunteers Reflect On Their First Surgical Mission

The Novick Cardiac Alliance team celebrating after a successful mission

Our most recent trip to Libya was truly groundbreaking.

The first open heart surgery in the city’s history and a hospital flooded with camera crews to document the occasion showed just how thrilled the local Libyans by this first mission, but this was also a first for some of our volunteer nurses. Of all places, Angela and Amalie chose war-torn Libya for their first volunteer experience with the Cardiac Alliance.

Here are a few of their thoughts on the whole experience:

How did nursing in Libya compare to nursing back home?
Angela: “I enjoyed how much more time we had to actually pay attention to our patient. Back home, so much time is spent charting everything.”

Amalie: “It’s really cool to see how much you can do with pure assessment and vital signs. Back home, we send for diagnostic tests from the lab constantly, and it helps. But everything felt more efficient not having to jump through so many hoops.”

Twinkies in Libya!

What made the work challenging?

Angela: Culturally, the accountability and the sense of time was so different.

Amalie: I loved getting to work alongside the locals in terms of cultural exposure, but communication with locals was a big challenge.

I started out frustrated with the local nurses, like they were just a tag-along making my work slower and a bit harder, but I began to realize how valuable they are to the team, especially if you allow and trust them to have responsibilities.

Twinkies in Libya!

Thoughts on training the Libyan nurses?

Amalie: When you do the work for them, they don’t feel accountable. When you give them the responsibility to do it on their own, they can rise to the occasion and it’s amazing to see.

Stacey told me to make a plan with the nurses I was overseeing, and that worked well. I could leave for a couple hours at a time, and when I checked back they’d done everything right. Setting expectations ahead of time really helped.

How did you find working with Dr. Novick’s team?

Angela: In general, Dr. Novick’s team was really supportive and fun. They weren’t intimidating to approach. I was surprised by how well they all knew each other.

Amalie: I remember handing a little boy to his mother and was impressed that Pasha (ICU Intensivist) was right there helping position chest tubes and IV lines. No doctor back home would be that involved, helping handle the patients.

Twinkies in Libya!

Highlights of your time in Libya?

Angela: I loved getting to work with the locals. I’d like to experience more of the culture, and I enjoyed visiting Libya because it isn’t a place I could easily travel on my own.

Amalie: It was really cool hanging out with the local nurses, Fatma and Naima, outside of the hospital. It’s great getting to know locals outside of the ICU.

Would you do it again?

Angela: I’d do it again, but I probably wouldn’t come back to Libya. It’s a little more challenging and restrictive than I thought it would be.

Amalie: I may come back to Libya, but I’d like to work in a few other places. I think the main reason I’d come back was to work with the Novick Cardiac Alliance regulars. They’re just really cool and really experienced and fun to be around.

Final thought?

Amalie: This is real nursing. On trips like this, you do things because they need to be done, not just because it’s protocol or a hospital standard. I think that’s what made this all feel so ‘pure’—it’s all about the patient rather than following protocols for their own sake.

Amelie caring for a baby in Tobruk, Libya

Angela caring for a baby in Tobruk, Libya