Critical heart defect and the only chance to be saved❗️ We have until September!

This is a story about the suffering of a mother and her daughter. Drama of a child who wanted nothing more but to live... It is hard to describe everything that this innocent child had to go through to escape death! Great strength, determination and luck will no longer suffice! Dorotka had to undergo a difficult long heart surgery! If we do not save her until September, the worst will happen.

When I was still pregnant, I heard a diagnosis that no mother wants to hear: HLHS – hypoplastic left heart syndrome. This kind of information when I only wanted to be the happiest in the world. Everything was lost – I was frightened and in a stupor...

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The first talk with the doctor was like a blow – It is going to change your lives. You have to get rid of this child.
To hear something like this about your longed-for daughter...it was like a fall from a great height. I have never felt so awful. At that time, I thought that these words were the worst thing that could happen to me... I was wrong!

I asked the doctor if the child could have a regular childhood. He looked at me and said – yes! From that day, I have been clinging to one thought! One answer brought hope.

Despite that, each doctor’s appointment was full of pessimistic scenarios – she will be unable to walk, she will have many neurologic deficits and this terrible disease will influence her whole life.

A surgery in Texas was to be her only chance – while I was still pregnant – a stent was to be inserted into Dorotka’s heart. We received the bill: 3 million dollars. The statistics were frightening: only 4 in 16 children survived the surgery. We were not able to cover the cost. With pain, but also with hope, I decided to give birth to Dorotka in London.

The doctors were ready to conduct the surgery immediately after birth. And then, the first miracle happened – Dorotka did not need an immediate surgery. She was transported to a specialist hospital.

When she was 6 days old, the doctors said – we are not going to operate. Chances are 2-5%. It is pointless.

We were not able to accept this. We contacted our lawyer. For the first time in history, a medical decision to stop treatment was retracted.
The surgery had to take place 7 days after her birth – although the doctors told us that she will not be able to walk and that she will be a vegetable, I, as a mother, felt that it was going to be different, that my daughter would surprise everyone!

The surgery was the worst moment in our lives. The door to the operating theatre was closed. And at that time, nothing was up to us. We could only wait and loose our senses... 

The surgery was successful – Dorotka’s aorta was below 0,5 mm. It was a miracle that she survived so long... I entered the operating theatre to see her – and a couple of minutes later, her heart stopped...

They started reanimation that lasted for 65 minutes. Extracorporeal circulation, machines, open chest and visible heart... Dorotka was living for 41 days with an open chest. 

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But my daughter did not want to leave me – she made it and overcame death!  After almost 2 months – she started breathing on her own.
She bravely endured everything. The doctors could not believe that such a small being has so much strength.

We experienced another miracle as my breast milk supply did not decrease despite the stressful period. When I could feed her for the first time – she latched right away. She started putting on weigh as if she wanted to tell the world – I am standing up here!

We knew that there were two more surgeries ahead of her.
But the first one let us keep her in this world. As she was quickly putting on weight, the doctors decided to conduct another surgery in the fourth month of her life. This time, it was also successful.

Unfortunately, there were complications as a young doctor incorrectly estimated the depth of the intubation tube. It caused arrhythmia but Dorotka was saved. During each situation of this kind I felt that the limit of luck was running out. I was scared that the good fate will not last...
On 21 December, right before Christmas – we went home for the first time. It was our greatest miracle!

From the beginning I knew that we have to fight for the heart of our baby. That palliative care and playing for time were not the right options for us! I could imagine my daughter who was running, laughing and playing. I wanted for her the same things that all mothers want for their children!

The third surgery was to take place once she was 2-3 years old. During an angiography conducted in Italy there were unexpected complications!  The procedure lasted for 5 hours, but she was not admitted to the ICU.

I felt something was wrong. A mother knows... I remember that I was terrified for her life. 

Today, the story came the full cycle.

Two years have passed. We know one thing – Dorotka has to go to Boston in order for her life to be saved! This clinic is ready to conduct a long and difficult surgery but the bill so high that we are not able to cover it on our own! 
We are grateful that there are new possibilities for our child and that God still gives us the chance to fight for Dorotka. We are terrified by the fact that a huge bill was issued for our daughter’s life!