The boy with the heart of lion

Henriette Lamprecht - The little boy with his blond curls and big blue eyes quickly crept into many a Namibian''s heart.
The plight of Damian Sagner and his mom Roswitha''s desperate and unrelentless fight to keep her little boy alive and healthy, touched many who rallied to get Damian the much-needed medical help that could only be found in Germany.
Today his big smile and happy attire masks the battle of many years that sometimes seemed never-ending and daunting. But there was always hope and a fighting spirit from both Roswitha and Damian which would pull them through the darkest days.
Roswitha only found out about her son''s condition six weeks after his birth.
He had a transposition of the great arteries (the blood flow of oxygenated and deoxygenated blood was reversed), a very large VSD (hole between the heart chambers) and an unusual muscle string growing through his heart which was part of the heart valves.
"It was a miracle he survived that long without medical help. Usually infants with this kind of diagnosis undergo surgery weeks after birth at the very latest two."
Damian had his first operation at seven weeks in January 2013, after a dramatic emergency flight to Johannesburg. After two months in ICU, Roswitha came back with a critically sick baby that had to be on oxygen permanently.
"This was very difficult to arrange in Namibia as there was not a known case like his. However, he developed and reached all his milestones in time and against all odds, survived his first year before we had to fly to Johannesburg in February 2014 for his second operation," Roswitha says.
Damian survived the operation but it only bought him a little time. For a second time they had to fly home with no hope at all. It was the deepest darkest hole she fell into, Roswitha admits.
"I knew I was the only one able of helping my child, so I started contacting cardiologists all over the world. We had a good chance in USA with the leading paediatric cardiologist, but we did not have the money."
Finally, a female heart surgeon in Germany was found who was ready to take a chance on Damian. With the help of donors in Namibia as well as the Okanti Foundation, funds were raised to fly over.
A private jet had to be hired as Damian was critical and needed permanent oxygen and attention during the flight.
Two months after their arrival, a team of world-class doctors decided to operate on Damian only two weeks before his second birthday. Still, the outcome was not guaranteed.
"After 13 hours of surgery, we had the greatest news of all: They were able to save my child and fix his heart as good as possible. Now he had a chance to reach adulthood."
Damian and Roswitha stayed in Germany for more than six months as he was on blood thinners since he developed thrombosis during surgery.
Mother and son returned to Namibia in the middle of last year. Since then Damian has been doing well, but needs to be checked out by a cardiologist every few months. The blood thinner as well as the regular check-ups will continue for the rest of his life, but Roswitha says it is a small price to pay.
What the future holds with regards to complications, no can say.
"His chances are realistic, but there can be problems. At the moment I am very concerned about his chest, as it seems a little distorted."
She wants to get a chest protector as Damian has much pain when he bumps or falls on it and the steel clamps on his chest bone are too near to the surface.
Damian will also need lifelong occupational therapy as he had some neurological deficit in his left arm and leg.
Due to his condition, mother and son are often isolated.
"He had to learn how to play outside, be on a playground, to run, to climb and to slide and that at the age of 2 ½. Damian lived on a ten meter oxygen pipe, so there was no running around!"
Living with a child with special needs is a 24 hours mission, says Roswitha. "My life stopped when he was born. My priority became saving his life and giving him a chance to live a mostly normal life. With an odyssey like ours, you lose the innocence of real happiness, of laughter and of life itself."
But she is happy and enjoys her child every single day. However, fear is also part of their lives, always lurking in the background.
"The trauma is part of us and will never go away, you only learn how to live with it. I am a single, working mom and I am proud to say, I am a survivor with an extraordinary child!"
Her son will always be a heart patient who will need medical treatment. Even the flu can be fatal if not treated properly. Every infection has to be taken seriously.
Before his second birthday he had three open-heart surgeries on bypass, and his heart was stopped three times.
"I believe my child is very special because he has been touched by God."
Apart from the Okanti Foundation, many people invested in Damian''s journey.
"I will always be grateful for so much compassion and I promised to raise my child as somebody who will reach out to someone in despair; to give him or her a helping hand as once it was given to us. Damian''s heart will never be healed, but it is mended in the best way possible, making him my unique little boy."
Never take a moment with your child for granted, Roswitha pleads."They are the most precious present you will ever receive."
([email protected])