My Journey After a Perinatal Stroke

The beginning of our meeting was not very joyful because I was born with ischemia of my right hand. Ischemia may cause death to the cells of a body part, so my right hand did not work like it should. Because of this I was transported to the Neonatal Intensive Care Unit at Upper-Silesian Child’s Health Center in Katowice, Poland. There I was subjected to multiple tests, which confirmed that I had suffered a very extensive stroke of the brain and cerebellum. My condition was very severe.

More tests brought even worse results. It was decided I must amputate or remove my right hand forever. My parents were asked to sign an agreement. Before the surgery, we learned something positive. The doctors shared they would try to save my hand by instead cutting out individual pieces of ischemia. I had lots of treatments, but finally it was successful and now I have a hand! This was very important to me because my left arm is disabled due to the stroke. While still in the hospital, I started rehabilitation, which continues to this day and I am now 13 years old. My parents believed very strongly that we would be able to get out of it together and that they would do everything in their power to make me as able-bodied or healthy as possible. After almost three months in the hospital, I’m finally going to meet my family.

I started rehabilitation, which is long and very hard work. In the beginning, I did not like these sessions very much and I cried a lot. My parents took me there six times a week. It was very tiring, but we knew it would help me. When I was a year and a half, I started to use hippotherapy, which helped me a lot to strengthen various parts of the body. Hippotherapy is a type of rehab that uses a horse to help with movement.

I heard many times from various previous specialists that I may never walk and that it is worth thinking about a wheelchair. Fortunately, when I was less than two years old, I took my first independent steps. This day was a great happiness for my family. Our next task is to find a solution to regain a greater range of motion in the right hand. At the age of three, I underwent a complicated hand surgery at the Poznań Hand Surgery Clinic. My right hand is not fully better, but it is much better than it was before.

Although I am in rehab, I still feel the effects of stroke more and more. My hand is spastic and there is no hand supination, which is a type of movement. My leg on the paresis side, which causes muscle weakness, is getting shorter, thinner and the foot is smaller and smaller as I grow. For seven years we have been fighting with shoe inserts and orthopedic shoes. I have also been trying botulinum toxin, which is a medication. Unfortunately, these do not help, and the foot is getting more and more clawed. This causes tremendous pain when walking. I can only afford to walk a few steps because the pain is terrible. Together with my parents, we are looking for specialists who would help me.

Three years ago, I underwent a very complicated operation on both legs in in Krakow. We had great hopes for this operation. I had to sit in a wheelchair for three months because I could not stand on any leg. Trying to stand on my feet was very hard and the intensity of rehabilitation increased again to 5-6 times a week. In addition, I am home schooled, so I am away from peers. Despite such hard moments in my life, I try not to give up. I would love to be as able-bodied and healthy as possible, just like my peers, rollerblading, skating or riding a regular bicycle. At the moment, what bothers me the most is that I cannot perform some activities alone.

All activities that require the use of both hands must be done with the help of the other people. Together with my parents, we are looking for a solution to this situation and we very much hope that one day we will find a suitable solution. Since birth, I have been under the care of many specialists, starting from rehabilitation to visits with a neurologist, hematologist, cardiologist and orthopedist. I also use the help of a speech therapist and a psychologist. I am very grateful that fate has put on my way wonderful people, family, friends, doctors, specialists who are trying to help me in any way. Despite the fact that my life is different from the life of my peers, we will never give up with our parents in the fight for a better tomorrow for me and for more smiles on my face. The motto that accompanies us from the very beginning is “Only the one who fights- wins…” And that’s what we’re sticking to.

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