Blog : Ukrainian children

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

3 Days in the Life of Juliana

3 Days in the Life of Juliana

This is Juliana, she is 2 years old and has been sick for all of her life. She was born in Ukraine and her parents have worried about her since they found out she had a heart defect as a baby. Juliana could not play like other children and got tired very easily. She is a very determined little girl though , her parents say she is

‘a real little lady’ and already knows what she wants!

Juliana before surgeryJuliana was born with Aortic Valve Dysplasia (an abnormal aortic valve) and had an Aortic Valvuloplasty (repair of the valve) during the recent Novick Cardiac Alliance trip to Ukraine. Specialists from Cardiac Alliance have been working consistently with the team in Ukraine for 6 years and this operation was performed completely by the Ukrainian surgeon Dr Olga Buchneva with guidance and support from the Cardiac Alliance team surgeon, Dr Marcelo Cardarelli.

After 2 long years of waiting Juliana had her operation on 10th of February this year and just 2 hours after coming to the intensive care unit she began the serious business of coloring and drawing.

Julia colouring

Despite having such a big operation Juliana only had to spend one day in the intensive care unit and was on the ward by the next day. Just two days later she was not only doing well – she was trying to ride a trike! As her parents have said she really knows what she wants and now her heart is as healthy as her spirit! We believe there will be no stopping this little girl – her suffering is in the past and the sky is her limit.

Juliana 2

Help us to ease the suffering of more children like Juliana. Novick Cardiac Alliance are currently supporting the development of quality pediatric cardiac care services in several countries around the world, there are many more children, just like little Juliana, waiting for our help. Click here to Donate or give two weeks of your time and expertise as a Medical Volunteer.

A Tale of Two Cities

A Tale of Two Cities

Cardiac Alliance has been working in Tobruk, Libya and Kharkiv, Ukraine over the last few weeks and we have operated on 43 children in these 2 cities.

Both Libya and Ukraine are experiencing uncertainty and conflict that many of us will struggle to imagine. However, it is not so hard to imagine the heartache that a parent feels when they have a sick child. These mothers and many like them in developing nations all have a child with a congenital heart defect and are faced with the real possibility that their child will never receive surgery.

Sad baby Libya

The Novick Cardiac Alliance strives to help these parents and so, despite the conflicts, we have been working in these countries to provide much needed surgery and care to children.Though we feel a sense of satisfaction in being able to help these children we also feel a sense of urgency and disappointment-  Because for every child that receives surgery there are many many more that will not.

Small baby and nurse

The sad truth is that some children will die waiting. We all have the power to change a life together and give a family a brighter future.

Donate your time and expertise by volunteering with us  or give today and save a life.