MANIKE’S EXPERIENCES

By Wilbert Verheyen

A lot had happened in the life of Manike since her first hesitating knock on my front door; that was on one of the dark days before Christmas at the end of last year.

We didn’t know each other but she explained that she was a young Buddhist Subud member from Sri Lanka and that she was on holiday staying with a Catholic family here in the neighbourhood; she asked me where and when she could go to the latihan premises and what train she had to catch to go there.

It was clear that she was a new arrival in Greater London and that this new situation had overwhelmed her, a young woman who once as a baby had been put aside as a foundling without parents, brothers and sisters. Gradually she calmed down and confessed that she worked here as a nanny and a little bit later she explained that the real reason for her coming over here was in fact to get a new face.

During the first days I had wondered why she was always draping her raven black hair over her cheeks and I felt the immense pain she had suffered after local doctors had tried to take some tumours away,  but with them also her two jaw bones and even her eye sockets.

One day she showed me some photographs taken more than ten years ago and, lo and behold, there she was, a Sri Lankan beauty, sitting in the front row of a group of people and with me standing in the back row. It was taken at the end of the Annual General Meeting of our charity “Susila Dharma International”. She told me that she had worked  in one of our projects for the poorest of the poor in Dehiwalla, a suburb of Colombo. I didn’t remember her, nor she me.

Now she was by accident lodged in our neighbourhood as a nanny for the children of a Sri Lankan nurse who lived in the compound of nearby Ashford hospital. This nurse brought us on 23rd of January 2003, in contact with Mr. Bailey, an oral and maxillo-facial surgeon. For me this first visit to Mr. Bailey was loaded with responsibility regarding the financial side of this complex operation on Manike’s face and  the hospital costs; Scans had shown namely: the growing tumours behind her eyes, the disappearing of her eye-sockets, her open palate and her lack of jaws. As a first step the tumour behind her right eye had to be taken out, and this was already to cost £ 20,000 - and the other phases would together cost £ 80,000.

By coincidence Mr. Bailey had worked as a young specialist in Sri Lanka. He did a provisional diagnosis on the young woman of this small country and promised to help her free of charge for his part in the treatment.

Through the internet Manike contacted Ian, professional fundraiser for the Catholic Church.  Ian heard about the generosity of this surgeon, and he started his fundraising programme free of charge. His “Manike Appeal” went out and moved many people from all kinds of life styles and denominations: Buddhist monks in their Vihara and their parishioners, members of St. Vincent de Paul, Subud members and the International Almoners, the Mary Strand Trust, Sri Lankan Newspapers and their readers, the Charity of Ashford Hospital, the residents of Wisma Mulia and the local Ashford parishioners.

A deadly sweat broke out on Manike’s disfigured face when she heard that she had to leave the country because her visa was ending after her 6-month holiday. However the surgeons persuaded the Home Office to extend her visa and she felt secure again.

In between all these happenings the surgeons came together to plan their action and we all became very impressed by the thoroughness of their plans and afterwards by their procedures:

We had visited Kingston Roehampton Hospital for the scannings on 26 January 2003 and Mr. Bailey had shown us in March the growing lumps behind Manike’s eyes; I was shocked to see that her face had become so disfigured even since I had seen her a week before.

It takes too long to report all the visits she had to make in preparation for the real operation, but here are some glimpses of the exultation and pain that  Manike experienced during these months.

Firstly an anonymous sponsor come forward with £ 50,000 – and Manike, Ian and myself could go to the specialists and tell them that we had put half the money together. So Manike signed her hospital papers and the process started, but not without pain.

She had first to undergo a biopsy that caused her excruciating pain and unbearable thirst as without her palate she couldn’t drink after the biopsy.

After ten days Mr. Hyde, the consultant of the maxillo-facial Department of Kingston Hospital invited her to see him and explained the several stages in  the specialists’ work.

1)   The upper part at the right side of her face had to be done first as the tumour was pushing her right eye to the front and she was in danger of losing this part of her eyesight. After this tumour had been taken away, a new eye-socket had to be made out of a bone strip taken from her skull.

Manike has double vision because her two eyes are not in line with each other anymore; after the operation on the left tumour however there is a possibility that the double vision will disappear.

2)   The upper-part of the left side of her face had to be done next, using the same procedure as was done on the right side.

3)   The gap in the roof of her mouth means that food particles sometimes come out via her nose, but this gap can perhaps be covered naturally or by a better artificial palate.

The under-jaw needs to have a new jaw made out of a strip of shin-bone taken from one of her legs, complete with arterial and venal blood vessels,  so that it can be used as “living bone”.

4)   As the inner walls of her mouth are now more or less a formless mass of flesh, it will be difficult to find the nerves that belong there; these nerves, however, are necessary to make facial expressions, and the surgeons will do their best to let her face continue to smile.

5)   On 14 July Manike moved from the nurse’s home to Wilbert’s and from there she visited Mr.Gupta the eye-surgeon who also worked for free as a consultant and found that her eyes themselves are in an excellent condition.

Kingston Hospital laboratory invited her to have her blood tests done and here she received her latest instructions.

The 17th of July, she went back to Kingston Hospital where she got her room in the luxury Coombe Wing and where she had to do some fasting because the operation had to start the next day at 9 o’clock in the morning and would continue till 3 or 4 o’clock in the afternoon.

Before Mr.Bailey had written to Manike the following:

“I am planning to remove the tumour from the floor of your right orbit as on the inside it runs down behind your right maxillary sinus. We are hoping to retain as much of the bone of the right upper jaw as is possible.

“We hope to reconstruct the floor of both your right and your left orbits with bone from your skull. I anticipate that you will be in hospital four, approximately five days following this procedure. You have already met my surgical colleague Mr. Nick Hyde and he will be carrying out the reconstructive aspects of this operation and Mr. Nick Hyde will kindly supervise your immediate post-operative period”.

That same evening we visited Manike at 8 o’clock but she hadn’t yet  come out of her anaesthetic; Mr. Bailey explained however that the operation had been a success and it had put his whole team into a happy mood. Instead taking bone from her skull they decided that it had to come from her hip bone and that the left side of her face had to wait till she had recovered totally from this first operation.

The following days she received a lot of visitors but it took more days to recover than previously had been thought.

Manike had been a very popular guest in the Coombe Wing which became especially obvious during her birthday celebration in the hospital and at the time she left the place.

Now she is almost free of pain, and can walk easily to the parties to which she is becoming more and more  invited.

Very recently (4 September) she was invited to see Mr. Bailey who was pleased with her recovery and is planning already the second stage, which will happen in one month’s time.

After her first operation Manike wrote:

Dear Friends and Supporters,

I am very glad to speak to you,  as I am the happiest person in the world.  As you know I underwent the first surgery and am now recovering well.  Honestly I couldn’t have got  this done, without finding kind, generous people like you.   In other words it would have been only a dream for me to get such a serious surgery done under the best consultants in the world, without you.  I accept everything that happened to me in the U.K. as a good fortune.  So, I would like to send my message of thanks to everybody who helped me to obtain a better future for myself.  May you all have a healthy and happy life - by the Grace of God!