Monday, 31 August 2009

Secrets and lies

During the period when my chemotherapy seemed to be making no headway, it was difficult to plan anything but now it is working, although I get incredibly tired I have a lot more determination and drive to get through all this treatment, to enter The Bubble and hopefully survive. But now I have another goal and that is to find out more about my conception and possibly locate some half siblings.

When I first wrote about my conception, I assumed that donor insemination in the 1940s was rare and I have since been advised that this is not necessarily so. Obviously by the 1960s it was more common and perhaps more widely practised and known about but it was certainly going on in the 1940s on a regular basis. So why did I assume it was rare?

I had not really known much about it, I knew no one of a similar age who had been conceived in that way and my parents’ generation just never talked about it. I still know no one my age in England who is donor conceived! I am beginning to learn about the origins of donor conception thanks to kind people who have given me information and shown me where to look. I think the reason why it was not common in the 1940s in the UK was that Britain was at war with regular bombing in London, the law only changed in 1945 to make donor conceived children the lawful children of a marriage and frozen sperm was not used generally in the UK until 1949.

I am thrilled that a bone marrow donor has been found who could be a good match for me. But at the moment there is only one in the whole world and if anything goes wrong – he/she moves house or is not medically fit or changes his/her mind I really do need to understand more about my genetic history. In the future there are going to be more and more people of my age group who suddenly find they have odd DNA just when they need a transplant. A change in the law is needed - now

Friday, 28 August 2009

The need for answers

My husband is running a photography course this weekend and fortunately I am less tired so I am able to help out as I usually do. When I first found out about my conception he was very sympathetic but couldn’t quite understand why I wanted to pursue the matter and was afraid that it would cause me further stress. I lost my father when I was 17 in a road accident - yet another lorry - and I lost him again this year. Of course I still love him as the person who brought me up and cared for me just as I love his family and their kindness but now relationships have to be re-evaluated.

At first my son and daughter felt the same as my husband about my enquiries and a certain amount of curiosity too. However, their attitudes all changed when I got to the point in my blog when I told about my conception and I got an answer! Not an answer to my parentage but a link with other people like myself. I’d never knowingly met anyone conceived like me before in my life.

But I need to go back a little to explain why I started the blog. After news about my odd DNA and my conception I went through a period of grief about the past. I did all sorts of research on the internet about Reynold Boyd and the other fertility pioneers. I looked at the medical journals of the 1920s and 1930s which is where I realised how prominent the study of eugenics was in the discussions on fertility. However, I had to come to terms with the fact that probably no bone marrow donor would be found and I would die. Being musical I sorted out all the music for my funeral postponing the will until later!

Then I learned something amazing – a donor had been found in Germany. At last there was a possibility I could live, a lot of very difficult medical hurdles to surmount but if I could get through into remission I had a chance. At that point my oncologist found a new unlicensed drug to give me. From then on I made progress. I decided that the secrecy surrounding my origins was not my choice and I wanted to be open and honest, hence the blog. In doing so I started to learn, not just from the internet but from people just like me who had been living with this knowledge a lot longer than I had and who had banded together, given support to others and had tried to lift the veil of secrecy from this subject. As soon as my husband and children read some of their stories and opinions they realised why I had been right to go public and that this link was vital.

Wednesday, 26 August 2009

Harley Street Babes

Last weekend I hit a wall of tiredness which has continued to the present day. This followed two days of chemotherapy. The cause was not only the drugs themselves but the way they hit the blood platelets. Several times now chemo has been postponed because of this, but now it has shown to be working, chemo will go ahead but I shall have to shun the crowds and avoid getting infections as I will not be able to shake them off. Although I have my harvested bone marrow (frozen two years ago) which could rescue me if I get a serious infection, this is my insurance policy in case things go wrong after transplant so I must just be careful.

My visit to the bone marrow clinic on Tuesday leads me to believe I shall be going into the Bubble probably in January. So far this year I have discovered that an anonymous donor gave me life and another anonymous donor could save it. Perhaps it’s hardly any wonder that I have given up my anonymity to go public.

The first couple of months after learning about my conception were very bewildering and perhaps it is no coincidence that not only did my treatment stop working, but the lymphoma started to grow back. I started to read up about donor conception for the first time in my life. Other people, as I have since learned, have done infinitely more research than I have, and I am now learning from them. I realised that since there are no records available from the early years and birth certificates do not contain any relevant information, it is possible that some people have hundreds of half siblings and the potential for incestuous marriages is frightening.

On finding out about my conception I wrote to a leading fertility expert who often appears on television asking for help to trace my father. However, he declined and perhaps because of the murky practices of some doctors in the past there seems to be a real fear that somehow the medical profession would suffer if these records came to light. Now I am beginning to wonder whether this is because of the way individual sperm donations were used to father multiple conceptions or because of the involvement of some medical personnel in eugenics. It is obviously far more important to protect these individuals than the bewilderment and suffering of the donor offspring. Certainly the reasons for maintaining donor anonymity usually given to the general public are different from those I have mentioned. That refusal of help was a defining moment. I knew the only people who would help would be other donor conceived adults and I would have to find them.

Tuesday, 25 August 2009

Who was the daddy?

This blog is principally about my Journey into the Bubble, how I think I got lymphoma and discoveries along the way. Today I went to the bone marrow clinic and got an update. I even saw the outside of the Bubbles themselves. It is daunting but also exciting and I now feel much more motivated. It looks as if I shall enter the Bubble either later this year or more probably the beginning of next year. Things are definitely looking more hopeful which lifts my mood - particularly compared to the despair I felt earlier as to whether a donor would ever be found.

However, the discoveries I made about my conception have not only changed my attitudes to myself and my family but have posed tremendous challenges. I know of people in my position who have made enormous efforts to track down their parents and siblings often against the odds. Although the challenges I face now and in the future are rather different, this world of donor conception is one which poses a lot of questions and I think my thoughts will return here from time to time.

The origins of donor conception are both scientifically exciting and rather murky. If most sperm donations were from students, donor offspring should in all likelihood be intelligent - a parent's dream. Certainly the lists of DI adults who are active in this field would indicate this. It is also likely that potential parents would be reasonably intelligent regardless of any possible genetic engineering, simply because of the cost of the treatment. Appearance might be another matter and in recent years some fertility doctors have acknowledged that they regularly supplied sperm themselves and potentially fathered hundreds of children. Was this why parents were instructed to tell no one? Is there one gigantic cover-up?

Monday, 24 August 2009

looking at donor insemination in the early years

Since discovering about my own conception earlier in the year, I’ve been looking into the early practices of donor insemination. Obviously there was an ethical purpose to aid fertility but no one gave much thought to the effects on the children produced in this way. In fact, I’ve learned that there was a definite policy by some doctors to suggest that no one outside the parents should be told.

Some of the practices such as the secrecy of records are questionable. Medical students in particular regarded this as a way of making money, rather like the US blood donations in the past, so how effective the screening really was I don’t know – or even how sterile the conditions were. Before sperm could be frozen, donors were given sterile bottles to fill at home and deliver on a regular basis to the clinic.

However, what if there was a shortfall? Women were required to take their temperatures daily to ensure optimum time for ovulation and then travel to the clinic for the sperm donation by syringe. Although Dr. Reynold Boyd certainly interviewed both potential parents carefully and tried to match the paternal physiology and mental background, he does not appear to have always been successful as far as appearance.

One of the most usual ways in which children have discovered their origin is because eye colour was not carefully matched. Even basic studies in school biology lessons reveal that blue eyes are recessive genes and some children have been told highly imaginative stories about their eye colour. My mother tried to convince me for years that mine were grey instead of blue. The reason for my blog is because I understand the climate of secrecy years ago, I really don’t want to be part of this. I would like my identity to be open and honest and I regret that I shall never know who my father was or perhaps if I have any siblings – the latter is a very real loss.

Saturday, 22 August 2009

Entering the world of Donor Conception

As my mother is 95 and very deaf, there is a limit to how much I can question her about the past and how much detail she can remember. All the time I have been conscious that I must not seem to be critical of her actions in any way as it is through her resourcefulness that I am alive today. I also didn't want her to realise how shocked I was at the news nor how it might hamper my search for a bone marrow donor. I knew I would have to research the background to my origins myself.

The world I was entering was also rather murky. I researched the papers written by the early pioneers and it appeared that in the 1920s and 1930s it wasn’t only the Germans who were interested in genetic engineering, the UK and US also wrote about this. They seemed very keen that such fertility treatments should be offered to women of good character, class and background although the fact that these treatments were quite expensive and not widely available probably meant engineering by financial outcome rather than medical or legal decisions.

There was much discussion about the legality of these births. My mother would only go ahead with the treatment once the law was changed in 1945 to allow all the offspring of a marriage to be legitimate. Was this change in the law to protect the children or the pride of the father? Certainly no mention of donor conception was made on any birth certificates nor did there seem to be any requirement for permanent records to be kept let alone shared.

Medical students in particular regarded this as a way of making money, rather like the US blood donations in the past, so how effective the screening really was I don’t know – or even how sterile the conditions were. Before sperm could be frozen, donors were given sterile bottles to fill at home and deliver on a regular basis to the clinic. Anecdotal evidence of the period shows that although these were pioneering times for infertility treatment, there were some irregularities too which is perhaps why there is so much secrecy about these early records.

Thursday, 20 August 2009

Finding out about the secret past

Coming to terms with the fact that the father I lost to a road accident when I was 17 was not my biological father at all made me feel a bereavement all over again. I tried to make sense of my family relationships. It was obvious that my mother had never intended telling me at all and yet probably I would have guessed something was amiss as I grew up. It is difficult for normally honest people to maintain a fiction.

First of all I knew I had a very real affinity with my mother’s family in terms of looks, temperament and mannerisms. I loved my paternal aunts and uncles very much but as an adult found it much easier to maintain links with my mother’s family. So who was my father?

As a donor conceived adult I was entering a new world. Most people either were told as children or found out as teenagers or adults. Very few people of my age were ever told. Apparently 85% remain in ignorance. Whereas young people accept donor conception as just another fertility treatment, middle-aged people and the elderly avoid any discussions of this and I knew no one in the same circumstances. The few people I did tell could not understand my complete loss of identity and seemed amazed that I would be upset after all my parents were very loving and I loved them.

I cannot and would not deny this. I totally admire their resourcefulness but the more I read other DI adults views, the more I realised that - yes I should be grateful to be here but I was not born just to fulfil other people’s wishes, I have my right to a genetic identity. As an adult I was not seeking a father figure in my life, I’m a very happy wife and mother, but I did want information not only about my biological father but possible half-siblings.

Of course, back in the 1940s no one knew just how important genetics would be in the future or my own particular medical circumstances but the difference between the rights of adopted children to know of their birth parentage, and the rights of DI offspring couldn’t be more different. Records of private clinics such as 52 Harley Street were kept secret and actually destroyed when physicians such as Dr. Reynold Boyd died. Only DI offspring born since the 1990s can access their records. Back in March of this year I was truly in despair but I knew I had find out about my parentage somehow.

Tuesday, 18 August 2009

Trying to make sense of my situation

When I explained in yesterday’s blog how I had been conceived it frankly took a bit of courage for someone of my generation. I knew no one who had been conceived in the same way, partly because in the 1940s it was very rare but also because most donor offspring were probably never told so it was tremendously heart-warming to receive an e-mail from someone conceived at the same clinic. I actually wept; it was such a relief not to be alone.

In the 1940s donor conception was a comparatively new technique and the law had only just changed which ensured that such births were legitimate i.e. all the children born of a wife during their marriage were deemed to be the offspring of the husband. Otherwise there is no way that my parents would have ventured into this world.

Unfortunately, in those days it was all very hush-hush. Nowadays so many people have fertility treatment no one questions it. People know the difference between erectile disfunction and a low sperm count so there is no shame involved. However, in the 1940s low sperm count was not really understood.

At all events my parents told no one as far as I know. Only the original doctor knew and certainly not me. At first the shock of this disclosure was extremely difficult. Suddenly the whole concept of yourself, your family, your parents takes on a different perspective. I felt completely turned upside down. As if that wasn’t bad enough I realized that I was never going to find out who my donor-parent was, let alone his nationality. Since my DNA was rare, it was pretty obvious he was not British. Since my birth was not long after World War II and the coming down of the Iron Curtain, there was a strong likelihood of his being Eastern European. All I knew was that the doctor had studied my parents very carefully both physically and mentally to ensure a good match. As I am fair skinned with blue eyes, this eliminated about three-quarters of the world since fair hair and blue eyes are recessive genes.

Monday, 17 August 2009

Facing problems from the past

My mother had been married for seven years with no sign of getting pregnant. This was in the 1940s and infertility treatments were in their infancy.

I do understand how she felt, longing for a child of her own as I had two miscarriages before having my children. I really loved having children and although they are adult now we are a close family and I could not be without them. My mother is a brave, resourceful and determined lady and I was well loved by both parents.

She was nursing in the East End of London during and just after the Second World War and as she had already found that she was fertile she consulted a doctor for help and was told to visit Dr Reynold Boyd in the West End, an acknowledged fertility expert. He talked to both my parents about what could be done if they wanted a child.

Although I knew from my childhood that my parents had waited seven years before I was born and later that my father had had treatment for low sperm count, I knew nothing about how they finally solved their problem until 2009.

I was really worried about not being able to find a bone marrow donor because of the difficulty matching my DNA. My mother told me that I had been conceived by donor insemination – something of an irony in the circumstances. This completely shattered my world and seemed to be an insurmountable problem to finding a donor as records from the 1940s were usually destroyed, few donor-conceived children from that era knew about their conception and the law did not cover treatments prior to the 1990s. I was devastated – not a good state to be in when you are trying to defeat lymphoma.

Friday, 14 August 2009

Now the news of my latest CT scan has given me more hope that the bone marrow transplant will be a reality, I can’t help looking back at the despair I felt earlier in the year that a bone marrow donor would ever be found. I couldn’t understand why my DNA was uncommon and the only person to turn to was obviously my mother.

My mother is 95 years old. She will be 96 in September. She is lively and intelligent but very, very deaf. She spent nine years living with us very happily but when she became more frail she decided she needed 24 hour a day care and moved to a residential home. Her bedroom overlooks the park where she played in as a small child and where she did much of her courting with my father.

She enjoys sitting in the conservatory where it is light enough for her to read easily and she can see the birds in the garden. I knew I had to talk to her about something very personal but that afternoon there were quite a few people around. In that situation, we normally communicate by writing things down so I don’t have to shout about private matters.

I still have the notes of our conversation. I tore them from the book so they wouldn’t be seen by anyone else. I remember quite clearly asking her if there was anything odd about my background. She beckoned me to come close to her so she could whisper in my ear. What she told me was a shock and I had to compose my face very carefully because there were people around. I needed to ask her a number of questions and these all had to be written down. The news was shattering.

Tuesday, 11 August 2009

The promise of the rainbow

Today I feel stronger for two reasons. The results of my CT scan show that at long last my chemo really is working and, in addition, I’ve just come back from spending a very happy few days with my daughter who arranged a lovely restful break for us in Ireland. When you have children of your own you start to evaluate your own childhood and in particular your family background, not only to understand more about yourself but also to understand whom your children resemble.

When I was told that my DNA was “odd”, it was a great upset as I had always felt very secure in my background. My parents were loving and their marriage was happy. I knew that I looked more like my mother’s family than my father’s and that my mannerisms and expressions resembled theirs.

The Watsons were all very alike and my cousins look more like my sisters. I have always felt a very instinctive feeling of family with them. My father always used to joke about the excitement in the air when the Watsons all got together and my daughter commented on how alike our voices are. My grandparents had come from Glasgow to England, they had worked hard and their children proved to be successful in life. I know that my paternal grandmother really loved my mother and hoped that she would marry my father as they were such a perfect foil for each other. So what was “odd” about my background?

Monday, 10 August 2009

Having had a quiet break in Ireland I feel stronger and more refreshed. I am now ready to write about something which has caused me very great pain this year and it resulted from my DNA tests to find a bone marrow donor.

In these politically correct times you have to read between the lines if you are told your DNA is “odd”. In other words, it is not common in the UK. As I am fair-skinned with blue eyes, this must mean that there is some European ancestry of which I am not aware. I felt sure I knew about my ancestry as I had copies of the family trees from both sides of the family.

I felt convinced I knew about my mother’s family coming from Scotland and Denmark, although there were fewer records than on my father’s side. At first I thought about writing to my paternal cousins to see if they had found out anything but all the time I knew I wouldn’t do that, I would have to talk to my mother – she was the one who would know.

Saturday, 8 August 2009

Return from holiday

It has been wonderful having a respite from some of the ongoing problems during our holiday in Ireland. Raymond's case has taken over three years now and continues to add stress to all our lives. I was disappointed that my platelet count was still low and I could not have chemotherapy as I desperately want to get into remission in order to have the bone marrow transplant.

The break away was very much needed and it meant going somewhere quite new and peaceful. We couldn't take all the long walks we planned as Anna had hurt her foot badly but we still got out and about even in the rain. The views of Lough Currane from out of the cottage window were stunning as the landscape was constantly changing.

The pictures will stay in my head always and are wonderful fuel to give energy for the difficult times ahead. Shortly I go to see the staff at the Bone Marrow Transplant Unit for their advice about what happens next. As they have lined up a donor for me in Germany they will, no doubt, not want to hang around. I was very lucky to find a donor at all because much to my surprise, after my DNA was taken, I was told that they were having trouble finding a match for me as my DNA was "odd". This sounded warning bells in my ears and led to some surprising discoveries.

Wednesday, 5 August 2009

Late Summer

I have just returned from Ireland after a few wonderful days spent in an idyllic cottage in Waterville, with a Lough to the rear and the Atlantic on the other side.  After seven months of gruelling chemo it was great to be able to recharge away from all social and professional obligations and to spend time with my daughter who arranged it all.

After my first lot of chemotherapy it was very good to be able to have some months of remission, to gain strength, finish my teaching on a high note and to be able to make some wonderful trips with my husband.  However the other side of the coin was the horrible shock of learning in November 2008 that the remission was over and lymphoma had returned.

I knew it would; mantle cell lymphoma doesn't go away but then the talk turned far more seriously to bone transplants and then the whole future, if I have one, became much more serious.  Chemo therapy started again in January 2009 but I still maintained my private teaching although it also coincided with a broken foot.  Our visit to the bone marrow clinic did provide us with hope especially as I was able to say that I was of Scots-Danish descent on my mother's side of the family and English on my father's - not really a problem compared to the difficulties some people have, particularly if they come from the Southern hemisphere.  So although there were major difficulties ahead we did have some hope and then things began to change!