Danis's story

For my son – so he may know

(Confessions of a concerned parent of a child with Cerebral palsy)

This is not going to be JUST one more in a series of stories ‘told’ about physical and other aspects [of the condition], or of the effects of human carelessness or lack of professionalism and incompetence of a number of ‘those who have taken the Hippocratic Oath’ and who are responsible for Danis’s condition and the condition of many other ‘Danises’.

This is also a big THANK YOU to all those kind people who believed in us, the Kadić family, all its members individually – our son Danis, Mommy Lara and Daddy Hamet…among others, because they did not consider Danis a lost cause.

Dear Parents, especially first-time parents, there are and there will ALWAYS be those who will tell you that your child is ‘completely ok’, that they are ‘experts’, and that there is no need for you to take your child to other experts.  There will also be those who will say that your child is a lost cause and that he will die attached to tubes (heaven forbid that you experience this situation), that he will not be able to hold a spoon in his hands, that you should ‘work on the next one’ (which I suppose figuratively means that ‘this one’ should be thrown into the rubbish bin), or they will say, “What are those people doing there! They are ruining our nation, degenerating our people, sending us ruined children! Oh yes, your child – I cannot help your child now; it is too late…He will never crawl, he won’t be able to sit, walk, live long.”  And there will be those who say, “Yes, this is not good.  Go somewhere else, but don’t tell them that you heard that from me.  You know, those are my ‘old colleagues’, that’s not really appropriate, believe me…, I’ll have problems…”.  Yes, it is ‘those people’ who must learn to love the human race before regarding their work (which is undeniably difficult, demanding, and full of responsibility…) as ‘a means of gaining financial reward’.

I can only say: believe in your child, believe in your heart, in yourself, and believe in work and discipline. And search, don’t give up! When the ‘right one’ comes along – who will help your child, who will give you back hope, give you a reason for existing – you will feel just as we did two years ago in Zagreb at the Polyclinic for physical medicine and rehabilitation.

Then, be prepared to give up EVERYTHING – your personal and private life, your friends, family, going out in the evening, shopping and luxury shops, romantic dinners, TV and watching football ‘with a cold beer’.  Yes, maybe you will be told, as we were (heaven forbid), that “…you have a less than one percent chance that your child will stand on his feet in about 10 years in some form or another, but know that that will be the best that he can do” and at that moment, your child’s rehabilitation WILL BE YOUR WHOLE WORLD.

And then, after many long hours of strenuous exercise, sweat, sacrifice, tears cried in the night when no one sees you, when everyone else is sleeping peacefully and dreaming sweetly, you dream that undreamt dream – beauty appears at once; you have a child who is in your arms ‘25-hours’ a day, every second you smell him, feel his breath, not one moment of  his life passes by unnoticed by you and you have a child who is progressing, every day, more and more, who loves you unconditionally in his own innocent, truthful, childlike way and you love him unconditionally – and this is your whole world!!

Our son Danis, as Prof. Polovina says that ‘emotional, warm, curious child’ or ‘the big little fighter’, as the media here call him, is now three and a half years old.

Until he was six months old, the neonatologist at the County Hospital considered Danis to be a ‘healthy child who only needed to exercise his hips’.  At the beginning of his seventh month of life, we noticed that our son was making some slightly unusual and specific movements and grasps.  For example, when Danis held an object, it was impossible to take it from him because of his firm grasp.  The family was happy about this and they said that he was strong like his father the karateka (the karate practitioner).  Occasionally Danis’s legs would become stiff or his foot would become slightly bent (but this was barely visible to lay-people and first-time parents like us).  We didn’t pay attention to the fact that his thumbs were sometimes enclosed within his fists.  When we reported our observations to our paediatrician we were told, “That is nothing; exercise his hips, take some vitamins, go to the health centre and do  exercises in the physiotherapy department [where there is NO paediatric physiatrist but where we did go every day for about 1 – 2 months], and everything will be ok.”  After that Danis received a ‘little vitamin cocktail’ – a shot that shocked the nurses at the Children’s Clinic because they couldn’t believe that something like that was allowed to be given to babies.

No, but we persevered.  You must be PERSISTANT and TEDIOUS.

When my brother (who has two daughters and experience with children) noticed that ‘that’ with Danis wasn’t ‘really normal’ and advised us to surf the Internet, our world caved in.  According to the participants in various forums concerned with problems of sick children, we guessed that something VERY BAD was happening with Danis – something in the brain.  Since Danis was already almost nine months old by that time, and in the forums it said that that was already ‘much too late’ for timely and successful treatment of disorders of that kind, we requested an MRI of Danis’s brain at the Clinical Centre of the University of Sarajevo, which was difficult, but which we managed to accomplish.  That is to say, in Bosnia and Herzegovina one waits for an MRI of a child’s brain for a couple of months – MRIs (for children from all over Bosnia and Herzegovina) are only done on Fridays.

After completing the MRI of Danis’s brain our fears, anxiety and sense of foreboding proved true.  It was explained to us that the problems with Danis were most likely caused by human error during delivery or in the post-natal period because of inexpert and inadequate medical care (which, according to the doctor, would probably be confirmed after the follow-up MRI was done in about 8-9 months).  In short, periventricular changes (on both sides of Danis’s brain) were detected, which could correspond to post-hypoxic changes, but the onset of leukodystrophy could not be excluded.  We were told (off the record) that this second possibility was included in order to give us a possibility of doing a second MRI, and of course, to ‘cover themselves’ – as I see it in hindsight.  For us ‘lay-people’, and translated into everyday language, we were told that as a result of a short deprivation of oxygen to our son’s brain, Danis’s brain was damaged; tiny, dead, amorphic masses – scars in the brain, which cannot be healed or repaired – were the result.  To quote the specialists, our son’s brain, “was as full of holes as Swiss cheese” and repair was impossible; we were told that we could “only do a little to make his days easier”, and were asked where we had been until then – “you’re too late,” they said.

What did we HAVE?  Simply put, a 12-month old baby, who did not roll and who did not crawl properly, a son whose hands and feet were already beginning to become deformed and occasionally stiff, as if in a cramp, a frail child, who at one year of age could not, didn’t know how to, and was not allowed to sit and who had a stooped posture, a son who turned into a ‘banana’ when he was excited, a son whose legs went up when you moved his head down, a child whose thumbs were always inside his closed fists, a child, who could not lie on his elbows because he immediately fell uncontrollably and hit his head on the floor, a child who didn’t have any protective reactions.

In ‘medicalese’ [at the beginning you may find it difficult to find your way around the vast number of medical terms] Danis’s condition was as follows:

“…Danis K., 11.5 months old.  Spontaneous mobility inadequate for age.  According to mother, rolls from back to stomach more often on the right side.  During traction response modified by Vojta the head follows the thorax.  When he is put in a sitting position, he cannot sit independently; pronounced curvature of the spine.  The forward protective reaction is just being formed.  The side protective reaction has not yet been formed.  Axial hypotonia evident.  During the Collis horizontal reaction, performs support reaction on hands extremely slowly with greater deviation at the lower extremities.  Evident deviation during Vojta reflex.  On axillary suspension crosses the lower extremities, hyperextension with increased miotatic reflex, etc., etc….Therapy: it is essential to intensify the rehabilitation treatment according to Bobath.  Essential to begin treatment according to the Vojta method; necessary to train the mother in this method [why not the father, too!?].

And we began with rehabilitation – FIVE whole days of training!  At the end we were told, “Danis will never stand independently, will probably not crawl, eat independently, or write either.  This [i.e. the treatment] is just to improve the quality of his [ruined] life, to make it easier for him until –… no one knows – probably not long.”

We exercised.  And we didn’t believe.  We went to the physical medicine and rehabilitation department of the medical clinic for treatment and again we didn’t believe that in this computer age, in the age of microchips, genetic engineering… that nothing could save our son.  We searched, we surfed the Internet, we leafed through medical literature, and we bought National Geographic CD’s about how the human body functions – especially about the brain and motor control.  We searched for ways to improve Danis’s motor control in the methodologies, training processes and techniques of various sports – psychologies, methods, especially our mental attitude; we cut out newspaper articles, used vitamin supplements (made from honey or with omega fatty acid supplements); we sought advice, prayed to God and we didn’t even have a diagnosis of Danis’s condition yet – “You will get that after five years, when the development process finishes,” we were told in ‘one of the institutions’.

And then one day, in the summer of 2007, during a chance meeting on one of the streets of our city, Dr Lilja Šeštić, an excellent paediatrician, warmly recommended (with a limitless guarantee) her ‘dear professor from Zagreb’ – Prof. Milena Stojčević-Polovina.  “If Professor Stojčević-Polovina doesn’t succeed in making your son capable of independent life, then, believe me, it’s not likely that anyone will succeed.”  We asked about Professor Stojčević-Polovina in forums, checked scientific journals, asked friends, doctors including Dr. Karabeg and Dr. A. Buljin in the United States, Dr. Gasal-Gvozdenović – they all told us that they (if they were in that situation, heaven forbid) “would only entrust their child to Professor Stojčević-Polovina – not to anyone in America, Ljubljana, Cyprus”.

YES, at that same moment (we didn’t waste a second), we contacted Professor Stojčević Polovina and on 21 June 2007 in Zagreb, Prof. Stojčević Polovina (whom we understood and discovered later on to be an expert for physical medicine and rehabilitation, an academic advisor from Kosirnikova Street in Zagreb) got her first ‘glimpse’ of Danis’s condition.  Can you imagine a WHOLE DAY examination!?  Where we’re from, ‘in the middle of the mountainous Balkans’ this examination lasts five minutes.  Observing, monitoring and becoming aware of Danis’s movements, ‘symbolic’ attempts, behaviour, Danis’s motivation to show what he knows, observing both of us parents, analysing the way we carry out our exercises, how we make contact with our little one.  She explained to us her ‘methodology’ and – what was then (and now) amazing and unbelievable for us – she told us that we could get an immediate diagnosis of Danis’s condition, not ‘in five years’.

Diagnosis: Cerebral movement disorder (tetraparetic pattern – stronger in lower extremities).

Leukodystrophy, tuberosis, you know – the dying away of brain cells, or (heaven forbid) – genetics, chromosomes – all nonsense!

Recommendation – rehabilitation treatment ESSENTIAL.  What we were told: exercise and exercise (naturally – according to the professor’s methodology, her approach, her method and her team – true-blue, expert, friendly.  All of them always smiling and friendly, even when they are ready to drop; a Nescafé or Turkish coffee always waiting and juice and candies for the youngsters) and then exercise again – SUCCESS!? – GUARANTEED – in a certain form, if all of the above-mentioned principles are respected.  Possible new problems? Naturally – but not with the child, or with the mother, probably with the father, ‘the weakest link in the chain’.  If ‘the head honcho’ survives, our collaboration will be successful and will come to an end.  WHEN!? In four, five, seven years, maybe sooner.

So – that is that.  We gave our word, we promised and ‘started’ – full throttle – just like an airplane taking off, to the very end!!!

Here I won’t talk about ‘techniques’, exercises, methods.  You will get all that information in Kosirnikova Street, across the street from the “Sestre Milosrdnice” University Hospital.  The close-knit team there does that magnificently and expertly.  The head of the team is an extremely good person who loves all of our ruined children, our sons and daughters, and she is also a professor and scientist and mother and a caring grandmother; she is extremely expert, sometimes strict – we give you our word; Danis (a child with cerebral palsy – tetraparetic pattern, who after about two and a half years of work and exercise started crawling properly, a boy who was written of by most people) gives his word.

YOU must develop and incorporate the training process in yourselves.  For the child it is easy, he is a ‘tabula rasa’ (a blank slate) and he will accept everything that you ‘programme’ in him, teach him – incorrectly > incorrectly; correctly > correctly; but ALWAYS keep in mind that ‘nature tends towards chaos’, towards the ‘wrong way’ and that is why you must be there – physically and mentally – and pursue a goal set somewhere far on the horizon, at the zenith – a goal which you cannot reach for at least half a year, a year, because you will not see any improvement – and that is the key to everything, your motor, your moving force, your fuel.  At times that are the most difficult for you and when neither you nor your partner want to live – find strength in yourself and exercise and exercise ad nauseum – remember your child, his (unquestionable) future, the friends who support you, the generous people who help you because they believe in you, in your child, other sick children.  Be aware that you will not be able to do this alone; go public, talk, relieve your soul, and seek similar experiences.  From this, take something that will raise your spirits, stimulate you (not what will not throw you over the edge – you were thrown there a long time ago, not of your own will or fault; it is good to climb back up).  Leave your self-pity and hold your tongue; it could be worse, heaven forbid.

Laugh, make jokes, because your child feels everything, understands everything, however strange and incomprehensible that may seem to you.  Imagine – he is in your arms ‘25 hours a day’; he will understand you with your touch alone, your thoughts, movement, scent.

“Daddy, why are you sad?” Why, son…?” “Well, daddy, there is something dark between your eyes”.  Imagine, that frail child, not yet two and a half years old….!!?  And he will memorise everything, copy everything.

You must have a training process; you must develop it…How!?  Create your own system, motivation, inspiration – but it must be constant, every day, every hour.  In your thoughts when you are ironing, preparing lunch, eating.  Seek new solutions, better motivation for him and for yourself.  If needed, lie with your child on the floor, do a push up, straighten out your back and show him how to do it properly.  Forget the generation gap, the distance, embarrassment – and always smile.

When your child is drinking milk, when he is laughing and watching TV, work with him and then work some more – with his fingers, lightly on his feet, with his hips, his thighs.  Stretch-bend on the way to Zagreb, in the car, while walking to the Polyclinic – “fingers, son”, “careful, thumbs out”, “straighten your back”.  Nice, in a cultured manner, with respect because he, that ‘little one’, has a soul, pride.  If anyone deserves respect then it is those ‘little ones’, who didn’t do anything to deserve the fate that befell them.  You should at least try to make their lives easier, to make them accepted, because their lives are difficult in and of themselves – without a childhood, or playing with friends, or the other joys of childhood, all they have is work and discipline and a little bit of relaxation.  They are little heroes, with big hearts.

And write, draw!  Record every breakthrough, every movement, every observation, every hint your child makes – be it positive and good or negative and bad.  Focus on the bad – you don’t need the good – because that is ok on its own.  You must improve the bad; only then is there progress, steps forward, little by little.  There are no leaps overnight; find beauty in small steps and WRITE and observe and record.  Make files, databases, binders, photo albums, video recordings. Only then will you see any progress; help yourself so that you don’t lose heart when it is difficult – and there will be moments, hours and days – I assure you!

Multiply yourself! You must be realistic; you must be your child’s physiotherapist, and teacher and counsellor and best friend and parent; you must sometimes be strict, when that is necessary but in small doses because the biggest mistake you can make – a grave disservice – is to treat him like a ‘sick person’ and give in to his wishes all the time.

Zenica to Zagreb once per week, then twice a month; and now once every month or month and a half.  Naturally, because of Danis’s progress – fantastic progress.

We were told at the Sveti Vid Specialised Ophthalmology Polyclinic in Belgrade, Serbia (where Prof. Autrate from Switzerland and the polyclinic staff headed by Dr. M. Dragović successfully operated on Danis to correct his strabismus and to solve problems related to his amblyopia) and at the BEL MEDIC special polyclinic that Danis’s success was unbelievable – that a three and a half year old child with cerebral palsy could crawl properly; they said they had the VMA – a first rate medical institute in Belgrade and a Vojta Institute in Novi Sad but until now, as far as they knew, no one had been able to get such good results.

On the 28 May 2008 during a regular check up, Dr E.G. (Zenica Canton Hospital) concluded, and I quote: “continue rehabilitation with Prof. Polovina in Zagreb…visible progress in motor development.  Attached are lab results and other test results following detailed neurometabolic and genetic tests in Italy. [Danis was also in Fiorenzuoli d’Arda, Bologna, and Torino for medical tests]. Uses Radial Palmar grasp with both fists; has mastered rotation; lower extremities – visible progress, less on the right side, crosses legs only sometimes.  Objectively: he plays, communicates, and understands; he is communicative, emotionally warm – EVIDENT IMPROVEMENT, which is the result of daily work and the successful leadership of Prof. M. Stojčević Polovina, specialist for physical medicine and rehabilitation from Zagreb”.

And again – 6-7 hours of ‘active’ exercise per day.

By 2.5 years of age Danis’s protective reactions had been formed including the side protective reactions.  Spontaneous motor control had greatly improved, as had hip abduction.  Danis could then already support himself (in prone position) on his elbows and stretched out arms and he could lift the upper part of his body correctly and in the proper form.  On axillary suspension he no longer crossed his lower extremities – AT ALL!

Trips to Zagreb are now once every 20 days.  On 2 December 2008 in Zagreb at the Professor’s, in the presence of her always smiling and courteous staff, Danis did his first ‘women’s’ [my term] push up; this was a sure sign of Danis’s incredible progress and a sure sign that Danis would start walking – sooner than we thought – somewhere around his 6-7 birthday.

Then, at the professor’s suggestion, we made a decision (we gave a firm promise) that we would work with Danis to ensure that he started walking properly, correctly, according to the correct pattern.  Now twice the work, discipline, and effort would be required.  Because progress was apparent – he would start walking in some form or another in any case – why not put in the extra effort to ensure that he walked correctly, correctly enough that someone who didn’t know Danis’s life story wouldn’t even notice the ‘battles’ that Danis had led – or at least they would find it very hard to notice.

And here we are now, TODAY, in September 2009, Danis, 3.5 years old, has been crawling for some time.  Two months ago, during his first attempts, he couldn’t pull up his right leg well, his crawling was unsure, it was poorly coordinated; he often fell.  Now, in the middle of September, he can crawl across the kitchen, across the dining room and through the hallway, into the room ALONE, WITHOUT ANYONE’S HELP, CORRECTLY AND ACCORDING TO THE PROPER PATTERN.  Once again, a big THANK YOU to Professor Polovina; thanks to your whole team – you are spectacular.

THE END??? – Soon, God willing, “before he starts school, for sure,” says the professor.  And as you know yourselves, LOVE is needed for everything.  The team from Kosirnikova 14 has that; they know, they respect you, your work, effort, your fate, your child.  And that is the only way forward.

P.S. This was supposed to be a warm-hearted confession of concerned parents, if that is possible for this topic, a true story, still unfinished, about the EXTRAORDINARY progress that was made and barriers that were penetrated, the existential truth about how the word ‘IMPOSSIBLE’ could be given a different dimension, if directed by the right people, true humanists.  We give our thanks to these people – dedicated to their profession, to science, to charity, to loving their neighbours – and for a successful story with a ‘happy ending’, God willing.  We live in hope.

HameK