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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

Volunteer Story – Lacy Holevis

Volunteer Story – Lacy Holevis

Lacy Volunteered on our recent trip to Nizhny in Russia.Lacy with Team members

I’ve always wanted to do some type of volunteer work and this organization really caught my attention because they strive to educate and support hospitals and staff about pediatric cardiac care around the world. I’ve e been a PICU/CICU nurse for seven years now and I am passionate about taking care of children with cardiac defects. I love to learn about other cultures and how medicine and nursing are practiced in other countries. This organization is perfect for me because it gives me an opportunity to do both of those things while helping children at the same time. I also enjoy educating the local staff in other countries about how to take care of these children in the postoperative period. Teaching them how to do a good nursing assessment, take frequent vitals and showing them how to take out drains, lines and wires. The organization’s staff is wonderful and very knowledgable and I really enjoy working with them and learning from them.I would recommend any nurse that takes care of pediatric cardiac patients to go on a trip with this organization.  It’s so rewarding!

Lacy and BabyVolunteer with Cardiac Alliance and make a difference  today.
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.