A dramatic fight against time. We are begging for help – surgery or death!
Nadia has a chance for heart surgery in Boston, United States. Doctors said they couldn’t wait any longer and we didn’t have the money to pay for the operation.
Nadya was born on August 18, 2019, no one suspected that this was the real beginning of the fight for life. In her 17-week pregnancy, ultrasound examination revealed that Nadia would be born with a complex heart defect in the form of an atrioventricular septal defect coexisting with aortic arch hypoplasia.
When we heard this terrible diagnosis, we felt dark before our eyes, we ran out of breath.
At that time, we had not yet realized how serious the doctor’s words were, because we had the hope that she would be able to be operated on after birth, that everything would be fine, and this medical visit was just a terrible nightmare.
Unfortunately, this did not happen.
Nadya had long-lasting elevated bilirubin levels after birth, which worried doctors. A biliary defect was detected after scintigraphy.
This diagnosis disqualified our baby from further treatment. Kasai’s treatment has been canceled. Instead, on September 16, Nadya underwent a palliative Crawford procedure with pulmonary artery banding.
Shortly after that, we received a document from the doctors – disqualification from further treatment.
The worst was yet to come.
On October 3, what we feared the most happened. Our little daughter could not catch her breath on her own, they took her to the intensive care unit, where they intubated quickly, putting her into a pharmacological coma.
We begged God for a miracle, and every day, with the insistent sound of the monitors, we prayed that he would not take it from us, we need it. We! Not God!
Weeks passed and we were lethargic.
The miracle we asked for happened unexpectedly! Nadia started inducing her own breath which awakened our baby. We couldn’t believe it, we were the happiest people in the world at that moment, our little warrior was showing everyone how much she wanted to live and be with us.
Despite this, the doctors did not give her a lot of time anyway. On December 5, 2019, they sent us to a stationary hospice, where they gave us the last days of closeness with our daughter. However, our little one still amazes everyone, on March 9, 2020, we were discharged from the stationary hospice to the home hospice. Nadya is constantly developing and she surprises us every day. She is a brave and strong girl, fully curious about the world and happy, not letting you know that she is so seriously ill. And despite how much she has already been through and how much is still ahead of her. Every day we are accompanied by her wonderful smile, which gives us the strength to continue fighting for her health and life.
In the end, a certain doctor took Nadia under his care and gave us hope for treatment in the United States at the Stanford clinic.
We do not know the exact course yet, but we know that we must take into account the costs of several hundred thousand dollars.
We know one thing, we do not have this money, but we also know that as long as we are alive, we will do everything we can to get it to save our child’s life.
Please. Do not pass us by indifferently. Every single help count. Thank you
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