Marta's story

Marta’s birth

My daughter’s story began in my 36th week of pregnancy when my gynaecologist diagnosed me with intrauterine growth retardation and sent me to the hospital immediately.  CTG and ultrasound scans showed that Marta’s development had been significantly retarded during the last three weeks of pregnancy and that she should be delivered urgently by caesarean section.  Marta was born 24 hours later at 1.8 kg and with an APGAR score of 9/10; (she received 1 of 2 possible points for the assessment of muscle tone).  She was transferred to the Neonatal Unit of the Split University Hospital Centre (KBC Split) where she spent the first 40 days of her life.  On her ninth day of life a cranial ultrasound was performed that showed a relatively extensive periventricular haemorrhagic lesion (PVL) in the area of the basal ganglia and haemorrhaging in the thalamus on the left side of the brain.  An MRI taken when she was twenty days old confirmed the ultrasound finding.  According to the scan, the damage was caused three weeks before Marta’s birth because of a cerebral infarction of the middle cerebral artery, one of the four cerebral arteries.   From that moment, our family faced the fact that Marta would be a child with special needs.  The neonatologist explained to us that Marta would need a lot of help from us while growing up in order to reach her maximum potential.

Marta’s MR in the ICU reveals extensive cerebral infarction of the middle cerebral artery

Coping with the bad news

We were sad and stunned.  I wasn’t prepared for the scenario that awaited us because it was so far from that for which I had hoped.  My husband, on the other hand, frantically searched the Internet for information about what would happen to Marta, hoping for the best prognosis.  At that moment we were not aware of the fact that a person with the extent of damage that Marta had would with almost 100% certainty develop cerebral palsy.  The neonatologist tried to explain the challenges of working with a child with damage to the central nervous system, but she never mentioned that cerebral palsy was a possible outcome.  She prepared us for the fact that we would have to work a lot with Marta.  And today we are thankful to her for her warm words and for showing us patience while encouraging us to choose the option to work with Marta to try to go beyond the limitations of the diagnosis.

Before Marta was discharged from the Neonatal Unit, we were given instructions about baby handling and carrying out exercises according to the Bobath method.  According to the instructions of the physiatrist at the Split University Hospital Centre, we worked four times per day for 20 minutes, equally on the left and right side of the body, and with the same number of exercises for the arms and legs.  However, after coming home, our daughter’s condition became worse day after day.  We noticed that she wasn’t using the right side of her body at all, and that she was not even aware of this.  The right side of her body, especially her hand, was becoming stiffer every day.  We could barely even open her fist anymore.

Since the damage to Marta’s brain was on the left side of her brain, it was logical that the right side of her body was affected more greatly.  According to the same logic, we supposed that physiotherapy should be designed specifically for Marta.   At the same time, we felt that we should work more with Marta, but we didn’t know how.  With these suspicions we went to the physiatrist at the hospital in Split in the hope of getting physiotherapy designed especially for Marta’s problems.  The physiatrist maintained, without any logical explanation, that there was no need to make any changes to the content or scope of Marta’s therapy.  At that moment we understood that we would need to seek help elsewhere.  Marta was already six months old, and her condition was less than promising.  There was no more time for experimentation.
We made an appointment with Prof. Milena Stojčević Polovina; the daughter of one of our acquaintances was Prof. Polovina’s patient and this family was very satisfied with the approach used at the clinic.  We went to the Polyclinic, frightened, and in the hope that Prof. Stojčević Polovina would support our idea to work with Marta more and in a better way.  Before she started the examination, Prof. Stojčević Polovina asked us an unusual question: “What do you think is wrong with your child?”  Until that time no doctor had asked us that.  Professor Stojčević Polovina sat with us on the mat and asked us to play with our daughter, and while we did this she observed our and Marta’s reactions.  Then she examined Marta and established that Marta was an interested and warm child with motor coordination difficulties.  She explained to us that Marta fell into the category of children who without therapy would develop cerebral palsy with a probability of 100%.  She added, however, that it would be a real shame to deprive such a bright child of every chance of recovery.  She suggested round-the-clock, years-long work with Marta according to the method that she had created herself.

Professor Stojčević Polovina was the first person who explained the risk of development into cerebral palsy honestly and openly.  We were astonished by the fact that our child had such difficulties; at the same time, however, we were satisfied that we had finally found someone who could help us use all the time we had available to work with Marta.  The next day we had an appointment for training with Dr. Svetislav Polovina, who managed Marta’s rehabilitation from then on.

Years spent on the exercise mat

Dr. Polovina created a programme for Marta that included 6 – 8 hours of exercise per day.  For 4 – 5 hours we did exercises for the hands/arms in the ratio of 10:1 in favour of the right hand/arm and the rest of the time we did exercises for the legs in the ratio of 3:1 in favour of the right side.  Such an intensive exercise programme forced us to move to my parents’ home.  Grandma and Granddad did all the housework for us, and were Marta’s key entertainers – to help Marta endure such a great amount of exercise more easily.  At the beginning it was extremely difficult to spend entire days on the exercise mat.  We got up from the mat only when Marta couldn’t last any longer.  I exercised with Marta in the morning, and her father continued with the exercises when he got home from work.  The most important thing was that Marta accepted the exercises and that she exercised willingly and with interest.  It was also important that we (my husband and I) were both involved in the exercising.  In principle, we divided up the exercises according to which one of us mastered the technique of a particular exercise better.

Exercising was difficult during the first two years.  Marta progressed slowly, but without regressing.  Every three weeks we went to Zagreb to learn new exercises and to get support to continue.  Dr. Polovina was always satisfied with Marta’s progress.  Every time he set small and attainable goals that we could reach by the next visit.  Working with Marta we understood the depth and severity of her condition, but we also discovered ways of progressing through relentless effort.  From today’s perspective I don’t know how we all endured.  I believe that fear for Marta’s future was our motive for enduring as was Dr. Polovina’s warmth and enthusiasm.

When Marta was 18 months old, she mastered proper rolling.  At one year of age, we practiced crawling, but Marta wasn’t given permission to crawl independently until she was three years old, when she was able to crawl properly.  In addition to crawling Marta practised wheelbarrow walking.  This was the most technically difficult exercise that we carried out.  Crawling was physically and psychologically demanding because all three of us did it together.  Daddy controlled the arms, and I crawled behind Marta and controlled her legs.  Crawling for two and a half hours a day was exhausting.  We practised standing after Marta turned two, and she took her first steps when she was four and a half years old.  Standing was an exercise that sapped a huge amount of energy from my husband and Marta because the exercise was more or less static.  At that age Marta sometimes rejected doing the exercises.   We did everything to amuse and entertain her just to make it easier for her to stand.  I remember how the doctor jumped with joy when he saw Marta walking properly.  Prof. Stojčević Polovina then suggested that we apply to the therapy dog program to get a therapy dog for Marta, which would help Marta use her right arm better when leaving the house.  Spok came half a year later.  While walking the dog and playing with it Marta practiced using her right hand, without knowing it.  Spok is Marta’s secret therapist and her link to society.

Dr. Andrea Polovina also participated in Marta’s rehabilitation programme and she trained us in carrying out exercises according to the Vojta method.  After Marta turned two, we started working with the special needs therapist, Tamara Crnković, who to this day works with us to improve Marta’s use of her right hand, and to stimulate Marta’s intellectual development.  Tamara taught us how to foster Marta’s development through play.  At her (Tamara’s) suggestion, Marta started nursery school at 5 years of age.  With Tamara we mastered our first letters, numbers and we managed to get through the school enrolment preparations.  For a while we also worked with Sanja, an occupational therapist, in order for Marta to learn how to get dressed and undressed independently.

I must stress that teamwork is a quality that is actively cultivated by the Polyclinic.  The mutual compatibility of the whole team that worked with us was the key to our success.  Decisions about all changes to the therapy programme were made by the whole team together.  In addition to that, Dr. Polovina communicated with other doctors whom we visited, all in order to gain a complete picture of Marta’s development.

At six Marta walked the same as did all of her peers.  She learnt to run independently, and to jump on two legs and on one.  A decision was made to reduce the intensity of the training programme.  At seven, Marta started school.  She made friends at school and has a wonderful teacher.  Now she is eight and a half years old.  She is an excellent pupil.  She exercises half an hour a day, mainly perfecting the skills of her peers.  Marta goes to dance class, taekwando and English.  She has learnt how to skate and roller-skate.  As of this year, she has mastered the basics of skiing.

Today we live like any other average family.  For this we owe thanks to the staff of the Polyclinic for physical medicine and rehabilitation – Professor Milena Stojčević Polovina for their love, determination and know-how.  The only thing I deeply regret is that we didn’t go to the Polyclinic as soon as Marta was released from the Neonatal Unit.  Many doctors whom we visit nowadays say that Marta is a medical miracle but we know that it proves only that much effort, combined with great knowledge and good luck, can produce surprising results.

Marta’s mom