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BLAISE'S STORY

OUR SON'S HEALTH ISSUES

In the fourth month of the pregnancy we were told that our little tot will be a very special boy.
During the routine USG examination the doctor found out that his heart had defects.

Further tests were performed in Warsaw Bielański Hospital. Umbilical cord blood examination revealed that Błażej (we already knew that he would be called that) has a kind of genetic mosaicism of eighth chromosome. This disease is very rare and as such it has no name. It is so uncommon that none of the medical consultants had ever heard about a child with the same karyotype. Błażej has twenty five percent of his blood  cells broken.

The genetic issue caused some immune system disorders and delayed psychomotor development. This last problem was exacerbated by lengthy hospitalizations, mainly in intensive care wards. For more than six months Błażej used a respirator to breathe. He required large doses of painkillers, antibiotics and other drugs.

HEART DEFECT

The most immediate of Błażej’s health problems is a life-threatening, congenital heart defect.  This issue is so severe that doctors said he would probably die before his birth but he survived and was born second of August 2010 at Kraków Ujastek Hospital. Then after just one day he was transported to Kraków University Child Hospital. Investigations confirmed the original diagnosis - Hypoplastic Right Heart Syndrome (HRHS). HRHS is complex congenital heart condition, affecting the  hypoplastic right ventricle, pulmonary valve atresia and tricuspid stenosis. Usually such defect is treated with a three-stage surgery.

FOUR CARDIAC SURGERIES

 

Błażej had his first heart surgery when he was only four days old. It was successful, but unfortunately our  child suffered congestive heart and respiratory failure as a result of the surgery. It took six long weeks for him to breathe without the help of a respirator, and six more weeks for him to recover well enough to  come home.   Due to the extensive  respiratory therapy he lost his ability to suck, and so Błażej needed gavage to eat (feeding through a tube). Nurses taught us how to set up this little tube into his nose and  were finally allowed to take our son home!

During the next five months we were very frequent guests of the hospital mainly because of infections and gavage problems. At the age of eight months Błażej got pneumonia and needed respiratory therapy. He recovered but  was not able to breathe independently. Another cardiac surgery was required and was performed on 18th of May 2011. This surgery was successful and the  intervention allowed his breathing ability to quickly improve. After a four month recovery he was able to come home again.

Returning home again we focused on learning to eat, drink and on physiotherapy. At the same time we monitored Błażej’s heart and lungs to determine the best time for the second stage of HRHS correction. Unfortunately his left pulmonary artery did not grow, so another surgery was required to force it to grow and was performed on 2nd of July 2013. There was a complication just a day after the procedure when a blood clot blocked the new tube which was supposed to direct blood to the underdeveloped artery. Doctors then decided to perform another surgery to remove it. The procedure was successful but Błażej’s condition got even worse. He was getting weaker each day and stopped eating and in his state the antibiotics did not work, however he is a fighter and after another two months improved to a state where we were able to take him back home. 
  

BLAISE NEEDS A HEART OPERATION IN GERMANY

Despite this last surgery Błażej’s left pulmonary artery sill did not grow. Our son needs second stage of heart correction to be performed as soon as possible. The best time for this operation is usually when the child is six months old. The older the child the less chance of full success of the procedure. Błażej is now almost four years old and we cannot wait any longer. Professor Edward Malec of the German Munster Hospital, a specialist in this field,  agreed to perform the second stage of HRHS correction. We want his team to handle the operation, because they have developed improved techniques which give a greater chance of success for a child Błażej’s age.This method is easier to endure and the recuperation time is shorter. The German team has great expertise and experience in improving functionality of pulmonary arteries and we strongly feel that our son’s best chance to survive and then thrive are with Doctor Malec at the Munster Hospital as their level of expertise is just not available to us in our native Poland. His chances for survival  here at home would be much smaller, with greater complications after the surgery. Sadly any surgery outside of Poland must be funded privately outside of our public healthcare system.

PLEASE HELP US

 We are currently undergoing various rehabilitations for Blaise as specialists try to improve his quality of life with  speech therapy and a  psychologist. Our boy especially loves dogotheraphy (canine - human therapy,  see http://www.czeneka.org). He started going to kindergarten about a year ago and in a very short time dogotherapy became his favorite activity. He loves to play with other kids but his heart condition is a very serious obstacle in the development process.

The successful surgery will give him a chance to start walking and  to put on weight (he currently weighs 9 kilograms/24 pounds). In his current condition even meals are tiring him  with every bite of food making him sweat from the effort.  Without the surgery we fear the worst possible outcome for our beloved child, but the success of the operation will paint a hopeful future for Błażej with a good chance to greatly extend his life and more importantly the quality of his life.

COSTS OF PROCEDURE

Treatment in Munster costs 37500 EUR/ $51000 USD/ $55000 CAD. We have exhausted all our money for all the treatment and rehabilitation so far and the ongoing costs of Błażej’s care.  The operation must take place the second half of 2014 so we do not have much time to raise the funds.

We are in dire need and are asking kindly for donations to help us reach our goal.

You can help by donating to the Cor Infantis Foundation:

Fortis Bank Polska SA

Account for payments in U.S. dollars is

 PL93 1600 1101 0003 0502 1175 2024

Fortis Bank Polska SA

Account for payments in euro is

 PL50 1600 1101 0003 0502 1175 2022

SWIFT code – ppabplpk