THE STORY OF BIANCA, May 2004
(Text: Sylvia Eibl)
Bianca is a beautiful 10-month-old little girl, who has been lying in the Toplitza general hospital since birth, languishing while awaiting her death. She was born with a serious heart defect (transposition of the great arteries with heart valve stenosis etc.). Doctors and statistics have given her a maximum life expectancy of one year. Her delicate face is blue, her finger- and toenails almost black and she is also suffering from severe bronchitis.
Bianca is underdeveloped, she is closer in size to that of a 4 month-old baby. She cannot grip with her fingers, sit herself upright or babble, as 10 month-old babies normally like to. Her mother is 22 years old and lives in a shanty-town together with 4 other adults and a 3-year-old niece, in living quarters comprising around 30 sq. metres. Because of Bianca's severe illness, she is unable to take the baby home with her, which has resulted in dwindling contact with the child and the mother only visiting her child in the hospital every 2 weeks. Even during the visits Bianca is inside an oxygen tent most of the time, resulting in there being very little physical contact between mother and child.
The little girl receives no more than a small bottle of milk 3 times a day. No solid foods, no pureed fruit, just milk. She weighed 5 kilos when I saw her for the first time at the beginning of February in Toplitza. I learned about the tragic fate of the little girl through contact with Mr. Paal, director of the orphanage in Gheorgheni and also our official volunteer helper in Romania since January of this year. Mr. Paal is also an official of the Romanian Child Protection Agency. His plea to us to help save the girl from dying, led me to research the illness and make contact with some specialists in Milan. At the end of January I finally found one of the few heart-specialists, who is able to operate on this deformity, and who is willing to help the girl. This person is Prof. Frigola, who successfully carries out heart operations in Milan on children from all corners of the globe. With this everything became clear and there was no more time to be lost. The child had to be moved immediately.
The first time I see the child at the hospital in Toplitza, I receive a shock. She is really blue, her whole body over and her bronchitis means she just coughs and wheezes. Many thoughts are going round in my head: What happens if she dies on me on the way there? What if she doesn't survive the operation? For a brief moment I feel very scared. But I have no choice and there is no alternative for Bianca.
Suddenly, the attending paediatrician on the ward didn't want to hand Bianca over to me. She said it would be too dangerous, as either Bianca wouldn't survive the journey or she wouldn't survive the operation. I was to wait until she had recovered from the bronchitis, despite the fact that the mother had given her permission for the transfer and the operation. But recovery from bronchitis could take several many more weeks, and Bianca had no time left. In addition, the operation in Milan had been scheduled a long time in advance. I looked towards Bianca and she looked back at me with her beautiful green eyes. And then I started to fight for her: I argued, quarrelled, raised my voice and protested vehemently until, at long last I managed to assert myself and sign a document assuming responsibility for the whole action. Finally I had the little one in my arms, smiling at me; now it was time to get going, the ambulance was already waiting for us.
By now it was already 3 am. We had a 9-hour car journey ahead of us before reaching the airport in Bucharest. The night before it had started snowing like crazy. As we set off, there was a 20cm covering of snow on the road, and in addition a snow storm had formed. Of course there is no road clearance in Toplitza, the snow clearance vehicles only operate in the large towns and cities. With speeds of between 30-40 km/h we plough on hour by hour through the night in the ambulance. I have Bianca in my arms throughout nearly the whole journey, often giving her oxygen using an oxygen mask. Her coughing fits become less frequent during the long car journey. Every one hour she is given a warm bottle of milk to drink. The paramedics in the front of the vehicle are pre-occupied with the difficult car journey in the dark, they are little concerned with Bianca and myself.
The little one survived the journey well (me too, although I was at times unsure whether it was my heart beating so loudly for worry and fear for Bianca, or whether it was the bass coming from the radio music played by the paramedics in the front of the vehicle). At 12 noon we are at the airport, at 2pm in the air and finally at 4.30pm we arrived in Milan. Here too, there was an ambulance waiting for us. On the very same evening Bianca was to undergo a detailed examination.
During the days that followed, Bianca underwent many examinations in order to establish as to what extent she was fit to undergo the operation. Our organisation also provided for Bianca's mother Julia to travel on to Milan afterwards. We think it is important to promote contact between mother and child, and that Bianca and her mother are given the chance of coming together. At the same time Bianca also has a person in the hospital, who cares for and attends to her. After one week it is declared: she is fit to undergo the operation. Although the heart defect cannot be repaired in such that the blood vessels are returned to their correct positions, a kind of bridge (shunt) was however to be placed between the arteries and veins so that blood which is richer in oxygen can now be pumped around the body. Unfortunately, repairing the transposition was not possible at this point in time, as Bianca's blood vessels were simply too small and narrow due to her underdevelopment. However: As a result of this operation, which lasted 4 hours, Bianca can keep on living!
She now has rosy cheeks, her fingernails now only have a weak bluish tint. Her smile spans the whole of her face when you greet her. In the meantime she is now given pureed food and many vitamins, but above all she receives personal attention and love. After the operation she stayed in hospital with her mother for 1 week, then afterwards she came to me for 2 weeks before the trip back to Romania. During this time, mother and baby thrived. I observed the two of them, Julia learnt more and more about her daughter; she also learnt more about caring for and attending to her daughter. She is a good mother. Circumstances until now had dictated that she was not able to fulfil her role as a mother. Now, for the first time, she had the opportunity to be a proper mother for Bianca, free of worry and fear for her daughter. Towards the end of the stay, Bianca is finally able to grip things with her fingers, she shows much interest for the environment and people around her. She has also put on weight considerably.
On 9th March, I brought Bianca and her mother back home to Romania, with an entire child kit-out included amongst the luggage, ranging from travel-bed, rocker, clothing, pushchair, toys etc. to food and medication. Bianca now lives with her mother, together with the other adults and niece in 30 sq. metres living space. Certainly not optimal living conditions, but mother and child are together and have a new chance to make a fresh start, as far as their relationship with one another is concerned. In around a year's time, Bianca will be examined in Milan once more and the chances are high that she will then be able to undergo the operation, which will resolve her heart defect once and for all. The total cost of the operation and medical care amounts to EUR 11,000. Our organisation will provide for this sum. We have already made an initial payment to the hospital in respect of this.
Karoly Paal visits Bianca every 2 weeks to ensure that she is being well cared for by her mother, and to make sure that Bianca is in good health. |
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| Bianca shortly before departing for Italy. Her fingernails and the colour of her face are blue. Doctors have given her only a very short time to live |
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| An exhausted Bianca inside the ambulance |
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| Arrival in Milan during the night |
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| In the hospital in Milan before the operation |
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| Bianca resting in a hospital bed following the difficult operation |
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| The large scar on Bianca's chest from the operation
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| Bianca's Mother on a visit to the hospital |
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| 3 weeks later - a happy Bianca with an appetite
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| A happy mother and child on the flight back home |
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