“After all, your child does not die – this is the sentence I hear asking for help” [LIST]

A touching letter from Milanek’s mother came to the editorial office of MedTvoiLokona. On June 26, the boy celebrates his first birthday. This is bad news from a medical point of view. Time is against him.

1. During her pregnancy, Monika learned that Milanka’s health had some problems. Until giving birth, she lived in fear, fearing what other defects might appear
2. After giving birth, the boy went to the hospital every now and then. At one point, doctors gave him 50 percent. chance of survival
3. Milano’s mother promised that she would fight for him. However, it is not so easy to get help
4. More information can be found on the Onet homepage.

The doctor began to explain what the problem was. «I don’t think much has come to me then»

The University Hospital in Krakow, pathology of pregnancy – that’s where my story and my enormous fear began. It was there that I first learned how hard I will have to fight for the life and health of my unborn child.

My pregnancy was going well. We were very happy to be parents and we couldn’t wait to find out the gender of the baby. When that day finally arrived, I found out in a half-test that something was wrong. The doctor explained that the left foot of the child was deformed, but added that the defect could be treated. But when I took a deep breath, it felt as if the bad news wasn’t over. There was a long pause, and the ultrasound scan seemed to take ages. The doctor stared at the computer screen with concern in his eyes, and finally added that there was a much bigger problem with the right hand. Slowly, he began to explain what that meant, but then I don’t think much of it hit me. I did not inform anyone. After several hours of lonely waiting in the corridor, terribly terrified, I was referred to the professor-genetics. And that’s how it all started.

«My name is Monika and I am the mother of a wonderful boy – Milanka. Yes, I can reveal it – it’s a boy »

I cannot describe the pain I felt then until it was resolved. I spent my nights finding out what these defects were and how to help my baby when he was born. Until the end of my pregnancy, I did not know whether the defects detected on prenatal tests would be accompanied by other serious syndromes. Tremendous fear, many unanswered questions, and no guarantee that nothing else will happen. Many months of stress and sleepless nights …

My name is Monika and I am the mother of a wonderful boy – Milanka. Yes, I can reveal it now – it’s a boy.

We didn’t have it easy from the beginning, we’ve both gone through a lot, but we still wake up every day and fight anew. After many nights spent on learning about my son’s defects, I now know that Milanek was born with a very rare congenital defect of the right hand, the so-called radial hemimelia. This means a significant shortening of the forearm, deformed hand, stiff fingers and underdevelopment of the thumb, and translated into everyday life: the inability to perform basic activities.

Additionally, Milanek had a deformed foot, the so-called clubfoot on the left side. Without proper treatment, walking, jumping or running will become unattainable for my son. The foot treatment will last for many years and should be started in the first month of life. However, Milanek was born prematurely due to hypertension that threatened his life and my health. Immediately after his birth, we were separated, and Milanek went to intensive care for newborns. He was very flimsy and tiny. I spent many days with my son in the hospital alone due to the prevailing virus. Things got complicated with each passing day. When we finally left home, a few days later I found myself in another hospital with transient cerebral ischemia due to postpartum complications. Another days of separation, but unfortunately that was not the end of our problems. Soon after I was released from the hospital, Milanek had to fight to survive after being infected with urosepsis. Together we went to another hospital, where he was given 50 percent. opportunities. I will never forget that night. I stood by the incubator until morning and prayed that he would survive. Milanek did not give up and it became the driving force for us, parents, to continue fighting for his fitness, independence and a happy childhood.

«I’m doing what I can, I even started painting pictures and selling them»

A few months after the recovery and the supply of Milanek’s foot, we started to fight for his handle. Without surgery, Milanek will not be able to grab her toys or perform the simplest activities. As a mother, I promised him that I would do everything to make him suffer as little as possible because of his faults in his life.

So far, Milanek has undergone dozens of medical visits, four castings of the left leg, incision of the Achilles tendon, and currently has a special derotation splint on his feet for 15 hours a day to avoid recurrence of deformities.

1. Check also: What is wrong with my child?

In the meantime, after many difficulties related to the pandemic, it was possible to consult a sick hand at the Paley European Institute in Warsaw, where a world-renowned team has already performed thousands of recovery procedures in similar cases. Thanks to operations, children such as Milanek can catch, throw, play like their peers. Unfortunately, the amount for which the operations were priced is over half a million zlotys.

Milanek’s hand will always remain shorter, but two surgeries performed by an American specialist at the Paley Institute in Warsaw will allow the hand to be straightened and the thumb reconstructed. Thanks to this, the handle will be able to grow freely, and when the index finger takes over the function of the thumb, Milanek will be able to grasp it. It is the only chance for independence and improvement of my son’s quality of life.

Thanks to the Siepomaga foundation and FB auctions, we collected 183 thousand. zloty. A lot is still missing, as many as 329 thousand. zloty. I do what I can, I even started painting pictures and selling them. Milanka’s dad comes from Slovenia and there he also tries to publicize his son’s story and raise funds. It is not easy, because the collections there are not as popular as in Poland. It is even more difficult for us, because we cannot be all together.

We are fighting with all our strength to save our son’s hand, but we cannot cope alone, we lack the strength. Since March 9, I have sent a lot of requests, letters and messages asking for help. For over a year we have been living in great fear, stress and uncertainty whether we will be able to make it to the beginning of the road, which will be the first operation on Milanka’s hand. Because there is still another one ahead of us. And then years of rehabilitation.

When she calls out for help, Monika often hears that Milanek is not a child who is dying

Milanek comes from a large city, Krakow, with a million possibilities. But it is difficult for him to break through this variety. Nor is he a child who dies, as I can often hear in response to my cry for help. You could say: happiness in misfortune. Because yes, fortunately he does not die, but the fight for my son’s fitness becomes doubly difficult. My son will always be “different”, but skilled hands will give him confidence and strength in a world where this otherness is stigmatized with increasing ease and without major consequences.

On June 26, 2021, Milanek will be one year old, and the later the operations take place, the later he will start “learning” his hand again. I am very afraid for his future. We need more reach, your strength and your big hearts. We can’t do it alone, but together we can do so much!

The fundraiser for Milanek can be found here.

Also read:

1. “If I had known how seriously ill my child would be, I would not have made up my mind to give birth to him”. Hospice doctor: yes, I sometimes hear these words
2. The female reproductive age has increased by two years. This could have health implications
3. From the “little stranger” to the fetus. How did doctors manage to “see” under the skin of mothers?
4. Help for parents of disabled children? “My son is 30 today, and during that time I could only count on myself”

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