Blog : first-ever operations

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

David and Goliath

David and Goliath

David is 15 months old  and has been fighting to survive against all odds. David was born in Nigeria, which is a country without a pediatric cardiac surgery programme. Children in Nigeria who need a heart operation have to wait until a foreign team visits their country and hope that they are put on the short list.David with Dr Novick

David had a very complex heart disease called Truncus Arteriosus (the Goliath of this story) and for most visiting teams this was not a type of surgery that they would perform on a short surgical trip. Not because they did not want to but because they knew that David would take a long time to recover in the ICU as he would be very weak and sickNurse led rounds in the ICU

At Cardiac Alliance we believe that empowering the local team to care for children like David is just as important as performing multiple surgeries on a trip. During the first week of our recent trip to Nigeria we worked with the amazing team of nurses and doctors in the ICU in and helped them to prepare to receive a baby as delicate as DavidNurse Princess caring for David

David had surgery at the beginning of our second week and he did very well. He was very sick but the local Nigerian nurses learned how to care for him quickly. One nurse would sit beside him and rub his feet until he fell asleep because it was important to keep him calm – we said that she was better than any medicine!Nurse comforting DavidDavid won his battle- and with your help we can continue to care for children like David as they fight to live healthy and happy lives. We hope to make many more trips to Nigeria in the next few years, Volunteer with us or Donate today to make this possible.

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

Meet Munam, His City’s First-Ever Heart Surgery Recipient

Meet Munam, His City’s First-Ever Heart Surgery Recipient

This is Munam.

This lucky little guy just became the first open heart surgery recipient in the history of his city!

Having no access to treatment and very little money, Munam’s mother and father spent their savings renting cars and buying expensive Egyptian visas to travel back and forth across the border seeking care for their son. Despite the endless border-hopping, in the end Munam’s parents simply couldn’t afford the cost of surgery in Egypt.

Baby Munam after heart surgery

They had nearly given up hope when they heard about a ‘foreign team’ of heart specialists who were coming to do operations in their own city! Munam’s parents could hardly believe it, but they began to hope again.

Novick Cardiac Alliance arrived and, after assessing Munam, decided that Munam could have his operation and that he would be the very first operation! It was a complete success, and four days later he was ready to go home.

Shortly after Dr. Novick and the team provided Munam with surgery, his mother told us,

“My life was only night, but you brought the morning. Thank you!

Munam ready to go home

Are you ready to ‘bring the morning’ for more moms like Munam’s? Your donation helps us continue our lifesaving work around the world. Click here to give now.