❗️Little heart - very sick ... Help save Antoś!

When we found out that we would become parents again, we were really happy and did not expect that our little baby would be born so ill. The pregnancy and the waiting time for Antoś birth was supposed to be a special, joyful and peaceful, but it turned out to be full of tears, sadness, regret and fears for the life of our son. Our happiness lasted 30 weeks because it was then that during one of the prenatal tests the doctor suggested that there was something wrong with Antoś’s heart. Two weeks later, my husband and I went for a cardiac echo in Warsaw. The test lasted about an hour. The professor closely looked at the images on the monitor and took all the measurements.

After 20 minutes, we were called to pick up the results - this time accompanied by a psychologist, and I knew that there won’t be good news. We were disillusioned by the diagnosis we heard. The professor presented us with a cursory plan of the surgical treatment that was to take place during the first days after the birth. I could not believe what the doctor said to me. A birth in a reference clinic, an operation in the first week of our little son’s life. I was terribly scared and don’t remember much of the conversation afterwards. My world I knew fell apart into a million pieces which were hard to put back together. We could not hold back our tears. I saw tears streaming down my husband’s cheeks for the first time. 

Antoś was born on 11 March, 2020 in Krakow in a room full of doctors and medical staff. The neonatologist while taking my son to the incubator held his little face to my cheek and let me kiss him and I couldn’t stop crying from happiness mixed with helplessness, despair and grief. At that moment, the fight for our baby’s life began. The prenatal diagnosis was consistent with the postnatal one.

Antoś was born with heterotaxy syndrome manifested as right-sided isomerism which resulted in lack of spleen and extremely severe and complicated heart defect in the form of transposition of the great arteries with atrophied pulmonary trunk valve, complete atrioventricular canal, bicuspid right ventricle, bilateral superior vena cava and dextrocardia, i.e. heart situated on the right side. The doctors kept telling me that this is a very complicated and severe heart defect; the child will have to undergo several open-heart surgeries in his lifetime, and will be under the constant care of a cardiologist for its entire life. 

On the 13th of March, Antoś was transported by specialised ambulance to the University Children’s Hospital in Prokocim, where he had to fight his first uneven battle for the life he didn’t know yet; and in this way, Antoś was born for the second time on the 19th of March. Our tiny, beloved, defenceless, beautiful, awaited and beloved son. Our Antoś. I only wanted him to live, everything else didn’t matter anymore - Antoś was the most important. Our child spent 9 days alone in the intensive care unit; it was already the time of the pandemic, so there was no-visitor rule in hospitals. I was heartbroken that I couldn’t even hold his hand. I wanted so much to tell him that I was here and that I loved him so much.

After those 9 days, Antoś was moved to the cardiology unit. Every parent waits for such a phone call from the hospital because then we can be together with our child. We spent another 2 weeks in the hospital. It was the time during which I learned what to look for in the child’s behaviour and appearance, what could worry us and how to properly measure the saturation. It was a time of struggle to get rid of the probe and thanks to my determination and the sea of tears I shed, today we cannot complain about the lack of appetite. 

Antek’s look won’t tell you that he has such a sick heart, it is us parents who look every day at his blue feet hidden in socks and berry-coloured lips. After longer time of playing and bigger effort put, he starts coughing and when he has no strength, left he climbs on my knees and hugs me tightly. We try to live like any other family, we go for walks, go sledging, make snowmen. I want to give Antoś and Julia a happy childhood as much as possible. Today, I think differently about my son’s illness. I know that we have to learn to live with it.

There is still a long and bumpy road ahead of us, and Antoś has many battles to fight; but we are here and we will help him win. Family has a great power. I know from my own experience how much strength my family gave me in the fight for Antoś. A heart defect in a child is a great struggle for the whole family. Our biggest motivation is Antoś himself. He is our hero. We strongly believe and know that he will overcome all odds. 

Life with a child after heart surgery is not the same as life with a healthy child. We have to remember about the daily administration of medication, the measurement of saturation or even just massaging the scar. Due to asplenia, we need to take special care of our son’s immunity. Since there is no spleen, he is more exposed to all kinds of infections. 

The first surgery that our son underwent shortly after his birth did not fix his heart and did not correct the defects. It helped us to buy some time which is already running out. Anytime he puts the slightest effort, Antoś's hands and lips are getting bluer and bluer, his saturation can drop below 80%. Following many consultations both in Poland and abroad, no one gave us a chance of preserving the two-chamber heart.

We were repeatedly told that several surgeries will create a single-chamber heart, which is also a very serious defect and does not solve the problem. There are often many complications and consequently a shortened life expectancy. Our baby was born with two well-developed ventricles. Unfortunately, treatment in Poland of such a complicated defect is not possible. No doctor will undertake such a surgery. I wrote everywhere to be sure that I knocked on every door and that I did my best to help Antoś. 

We were given a new hope and a chance for a new and better life by Dr Pedro del Nido from the clinic in Boston - a man who has already saved many Polish hearts. Doctors in Boston will not only preserve the biventricular heart, but will also carry out a complete correction of the defect in Antoś’s heart. Our son will be able to have a happy childhood, he will be able to live like any other child, he will simply be with us. However, to live, Antoś must undergo another surgery as soon as possible.

Unfortunately, we have to pay for this out of our own pocket; these are huge costs which we cannot afford. That is why we are begging for help, every single zloty is worth the life of our child. Without you we won’t make it. Let’s create our own army for Antoś and believe that pieces of your hearts together can make a new heart for him.