In first year of Robin's life, we were fighting these problems: feeding, aspirations and subsequent pneumonias, apnoe pauses and fighting with people's stupidity, superordination and self-importance.

You probably don't know our country and our hospital care. To know the big picture, Slovakia is in the middle of Europe, we are going to be the member of European Union. We are not third-world country, our medical case is generally said good, but some things are totally different comparing with the 'West' countries. One of them is typical doctors' attitude to patients. We usually don't get any information about us or our children, specialists think of themselves often as of small gods. This was one of our problems after Robin was born.

It is said that the birth is a shock for children. In any case, this birth was shock for us. Pregnancy indicated some problems, but developmental defects in so considerable concentration was not predicted by anybody. After birth, we were said that Robin has cleft palate and hypoplastic genital. The second day we were said that he has murmur on the heart and pneumonia and Robin was transported to the second hospital. Maggie wanted to go with him, but our care for women after child birth is so good that it was not possible - she had to be 5 days in hospital. It would be probably dangerous to transport her to other hospital... 

Robin has spent about first 3 weeks of his life in the 'microwave'. He didn't respond to antibiotics and didn't increase his weight, his state was serious. After every examination done by specialists, we were said that he had new problems - impaired eyes, severe cerebral impairment, underdeveloped joints. He had to be fed through a tube - the probe (he had no sowing and bolting reflex). We have to say that doctors in this department were very kind. Although he still didn't increase his weight, they decided to give him us to our home, this was yet in time when Maggie get some intestine flu and wasn't able to stay in the hospital. Mrs. senior consultant called us home for several days asking if Robin is okay.

While we thought that the worst is behind us, the Destiny was just giggling. Robin had real problems with feeding. We were splashing little amounts of milk to his mouth via the special bottle for children with cleft, he tried to swallow. We were doing physical exercises called Vojta's Method what was rather demanding (we also didn't know that these exercises were in a conflict with his heart defect). During this exercise, he aspirated for the first time - he breathed spits into lungs. Another pneumonia, another antibiotics. The next pneumonias were caused by aspirations while feeding - he refused to eat. It was too tiring for him. Doctors forced us to feed him with force, what was compassionate for all present. He cried and aspirated again and again. In 2 and half month, he had 5 pneumonias. 

It was clear to us and pneumonia-doctors that the problem is in the cleft palate. The surgery was planned - but he cannot be operated while he is not healthy. Bud he could be healthy only after aspirations wouldl stop. We were in a circle (did you note that the most of circles are vicious?). And on the top of everything, he had apnoe pausas - this is less horrifying term for stopping of breath. When he had 14 of them, we gave up to count them.

It was about this time when we have learnt that our idea that doctors-specialists would know what to do, was - to say it finely - a naive idea. There were no doctor who would see Robin as a whole. Orthopaedics doctor chew Maggie out because Robin didn't carry the "Frejk's swaddling clothes" (because of joints). He was absolutely not interested in the fact, that when Robin lied on his back (and he had to with that thing), he had apnoe pauses. Every specialist saw only his specific part of interest and general doctors were afraid of Robin. And so we became aware of the fact that only we can decide what is really necessary to do, only we have real responsibility for him. In this situation, the fact that doctors usually didn't believe and listen to us was rather paradox (according to them, we shouldn't say anything - we don't understand it - we are not doctors, we are not specialists).

Mrs. Doctor F. from Cleft Advisory Centre asked us very energetically that his unability to eat has a neurologic origin and has nothing with his cleft. "Just do Vojta's physical exercises and it will improve." So we did and it did not improve. Instead of that, Robin had one pneumonia after another. We decided that it was enough and began to feed him with probe (tube through nose directly to stomach) at our own risk. We were said that once we begin to do it, he will never more learn to eat normal way. But we needed to break the circle (right, the vicious one). We have believed that once he doesn't aspirate, he would be at last healthy for a while, the cleft can be operated and as a result he will not aspirate. And it was precisely so. After we started to feed him with probe, pneumonias stopped. Moreover, special examination (the extraordinary nasty, believe me - its name is ezofagography) showed that it really is the cleft what causes his unability to eat.

And so we have prepared him for the first surgery - the cleft. Mrs. Doctor F. from Cleft Advisory Centre decided that it would be operated in her department, although there is not the respirator. While being operated, Robin collapsed (his lungs - it was the result of pneumonias). The respirator was not present. They resuscitated him some way and returned him Maggie to the room.

His tongue hanged from his mouth - not that he would like to do it. It was stabbed and bound - for not to sink and choke. The problem was that he was choking. He was unable to swallow spits. It was worse and worse. Maggie asked nurse if she could get the lace away. She replied that she would ask doctor. When it was really bad, Maggie came to the nurse and urged her to immediately remove the lace. (The nurce didn't say anything to the doctor before.) In a few seconds, Robin stopped breathing. The nurse resourcefully took him and began to run in the corridor and cried "he doesn't breathe, he doesn't breathe". Fortunatelly, second nurse took him from her, took him to the ambulance, she pulled out his tongue by the rope nearly to the navel and Robin somehow swallowed the spits and began to breathe. Maggie was looking at all this with astonishment. She asked why they don't remove the rope from his tongue - Mrs. Doctor F. from Cleft Advisory Centre didn't reply, just commanded nurses to drain off spits (which were not present at that moment). Maggie asked what they want to drain while he had swallowed everything. To the question "why don't you believe me?" Mrs. Doctor F. from Cleft Advisory Centre just turned and disappeared. After this second birth, Robin was tired and got to sleep with the rope in his tongue. Maggie decided that after he awakes, she would remove the rope herself. Mrs. Doctor F. from Cleft Advisory Centre came after a while and with the smile on her face said that when he awakes, nurses can do it.

It can be said that in spite of consistent care of Mrs. Doctor F. from Cleft Advisory Centre, Robin has survived. After a few months, he was succesfully and without any problem operated in other hospital (they were amazed hearing that he - in his state - could be operated without the respirator). After one month after the reconvalescence, he didn't need the probe and began to eat in a normal way. I am sending regards to Mrs. Doctor F. from Cleft Advisory Centre. 

Another characteristic for the first year of Robin's life is Vojta's reflex method - physical exercises for people with damaged brain, where healthy part of brain takes function of damaged parts on the basis of exercises. While Robin's neurological findings were not simple (in fact I don't know to define it - it was changing every time), we had to do exercises. These exercises are - if not directly aching, then at least very unpleasant. Children usually cry when doing the exercises with them as if they are paid for it.  

We had a little problem - Robin couldn't cry, he choked in that time. Fortulately, we had perfect neurologist. He said that Robin didn't need to do exercises because his brain is not damaged (today, we know it surely from CT), he had only central hypothonic syndrome - so he would be delayed with motor milestones, but he would reach everything. It was one opinion against nine others - all other doctors said that we should do exercises. We believed our neurologist (and also ourselves - we began to believe ourselves) and so we stopped with Vojta's Method when Robin was 7 months old. Today we are glad we stopped it. Robin is catching everything, although with his pace. And in his real genetic diagnoses (CHARGE), one of typical symptomes is a delay of motor milestones.