Pre Implantation Genetic Diagnosis: Designer Baby……

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Recently I was contacted by a lady who wanted to share her story but remain for now anonymous.  I found her story incredibly powerful and would appreciate you taking the time to read and comment.  Having babies is a luxury that I take for granted whilst so many others struggle and this post shows the reality behind sophisticated medical practises that can help others achieve their families.

I will hand you over….

After reading another blog regarding PGD (Pre Implantation Genetic Diagnosis) I thought it was time to document and share my own journey.  Too many posts and articles focus on the ‘gender selection’ or the idea of a ‘designer baby’ when the truth, for us, is far different.

 First of all, I will give a brief introduction to PGD:

Pre-implantation genetic diagnosis is a technique that enables people with a specific inherited condition in their family to avoid passing it on to their child. It involves checking the genes of embryos created through IVF for the specific genetic condition. PGD is available to couples that are at risk of having a child with a specific genetic or chromosome disorder. Only embryos without the genetic or chromosome disorder would be implanted in the uterus and, of course, it is not guaranteed that during treatment non-affected embryos would be produced. 

Our story

I am a healthy 29 year old and my husband is 35. We started trying to conceive in October 2008. After a year, we spoke to our Doctor and were referred for ICSI.  After waiting two years with the hope that ICSI (Intracytoplasmic Sperm Injection) would be straightforward for us and allow us to conceive, we were due to begin treatment when we received the news that my husband has a Balanced Y Translocation (exchange of chromosome material between two or more chromosomes).  This was a huge setback to us as it was yet another hurdle to get over and another delay to our dream of having a child together.  We could continue with ICSI, which does not screen the embryos being implanted and would not reduce the risks for us in any way, or we could abort this route and opt for IVF PGD.

The Balanced Y Translocation increases the chances of a pregnancy with an unbalanced chromosome complement, which can cause birth defects, severe additional needs, or miscarriage.  PGD for structural chromosome rearrangements allows couples to decrease these risks and to increase the chance of a healthy ongoing pregnancy.

After a consultation with our Genetic Consultant she explained the challenges that our future child could face.  We listened as she explained that our child had a 25% chance of leading a ‘normal’ healthy life. We were in total despair and our life crumbled around us. What was she saying? What does this mean? As we discussed it further the reality hit home – our child would probably have the following: blindness, deafness, poor mobility, breathing difficulties, growth problems … the list goes on. Is this a life that we want for the most precious person in our world? Again this was another very difficult subject for us, we felt extremely guilty, we were realistically attempting to play ‘god’. If it was you and you were given the opportunity to reduce your chances of miscarriage, reduce your chances of life limiting conditions, and reduce your chances of losing a child – what would you do?

Never in our life did we picture this happening to us. For a while we went through the feeling of ‘why us?’ We quickly realised that this would get us nowhere and we began to embrace the fact that we could make a difference. We could undergo this treatment and be successful and give our child the best chances in life.

I feel quite comfortable talking to my close family and friends regarding the difficulties we face. Only a few I feel really understand our situation. Some have been great and carried out a little research themselves into the condition and also the treatment we will be going through. My husband on the other hand struggles with this and would rather keep it to ourselves, which is why I am writing this blog anonymously, after all I need to respect his wishes too. I believe a reason he wants this to be kept quiet is due to the subject been so controversial. IVF itself provokes huge ethical, moral and religious debate but PGD IVF, being a controversial and new treatment which little is known about, splits opinions even more.  It is difficult enough to stay strong and proceed with this treatment without becoming a subject for debate amongst friends and family.

I find it so very frustrating reading blogs about gender selection and PGD.  Gender selection is illegal in the UK.  This is not what PGD is about.  Publishing posts about choosing the sex of your baby simply detracts from the real picture – PGD is an amazing treatment which can radically increase the chances of the few couples who would otherwise never have a healthy child, realising that dream.  Unless you’ve been in the situation yourself, you will never know what it means for couples like us. We would be delighted with a son or a daughter, all we want is for our child to have the best start in life and to be healthy. We don’t care about colour of eyes, hair, weight, height … this is not important to us in the slightest.

PGD may not work for us, in fact – the odds are against us.

I hope reading this blog will give people a better understanding of what is actually involved in PGD and why it is being offered to couples in the UK.  PGD should not be construed as creating “designer babies”. We could not manipulate (even if we wanted to) the features or characteristics of a baby. That is just pure fiction.

All we can do is try to eliminate genetic diseases in our unborn children. After all, this is our only hope!

I will leave you will one last thought, if it was you? Would you do things differently?

49 thoughts on “Pre Implantation Genetic Diagnosis: Designer Baby……”

  2. Pingback: Pre Implantation Genetic Diagnosis: Designer Baby…… « Northern … | Gender Selection Web

  3. to a brave woman

    thank you for sharing your story – the road to mummydom is not easy for many and many will choose not to be so open about the hurdles that they face… so thank you for being open about your journey.

    pgd is an emotive subject, ethically charged and discussed quite negatively in the media. i never thought it would be something i would have to consider but over the last 18 months it is something my husband and i have talked about…

    our daughter has spinal muscular atrophy and is wheelchair dependent. sma is a “good” disability to have – or so we have been told over and over again! – as it is purely a physical disability. living with sma has become our norm but we know that we could lose eilidh before she becomes an adult.

    we have considered pgd to add to our family, to share the love and, i have to admit, the burden too. i worry how n would cope is she was an only child… i wonder how n would cope with e if my husband and i were to die…

    we could take the risk, also a 1 in 4 chance, of conceiving naturally or we could fund pgd privately… a few of my friends know what we are contemplating because i could not go through it alone – nor would they want me to! – but i understand and respect your need – and your husbands need – for privacy,

    you *will* find your way through this, you *will* find the answers and you *will* have the strength to do this, whatever should be thrown in your path. it will be an emotional rollercoaster but, hopefully and surely, it will end with a life changing positive result…

    much love to a brave woman – you are in my thoughts
    x

    http://touchandtickle.blogspot.com/search/label/PGD

    • Thank you for sharing your story regarding your little girl. I admire you 🙂 You are right, PGD mainly attracts negative press, in writing these blogs and documenting my journey I hope to make a difference, even if it is a little difference.

      Please feel free to follow my blog, maybe we could discuss it further if you decide to go down the IVF PGD road. I wish you lots of luck, thank you again for your kind words.

      http://ivfpgd-hope2011.blogspot.com/

      x

  4. Would I do anything differently? No. I can only imagine the pain that your situation causes you both. If it were us i know itd be so very hard on our marriage too to be honest . I would grab every opportunity no matter how small, I couldn’t go through my life not being able to say ‘we tried everything, exhausted everything’ and I admire your honesty in writing this. I didn’t know the differences, was ignorant to them so you’ve educated me now and your words will stick with me if people discuss this.

    I wish you luck and happiness on the next part of the journey, I really do X X X

    • Thank you for your kind words, I really appreciated it. I am delighted with the responses that this blog has recieved regarding PGD.

      Yes, it can at times become stressful on our relationship, especially with the strains of IVF. We look at it as ‘our problem’ and not just DH. Communication is very important, DH struggles to open up, he is making progress though which is the main thing.

      Ad long as we have each other, we will get through anything.

      Thanks again x

  6. After also having ICSI myself and knowing how hard it is i have nothing but admiration for you both. Its a tough journey and i wish you all the luck in the world xx

  8. I can’t even imagine the pressures of the journey you’re taking. I know even trying naturally is hard and can be emotional. I hope it goes really successfully and you are blessed with your own bundle of joy.

  9. I would do exactly what you are doing, I think you are so brave (and none of us want to have to be brave-I know this) but I wish you all the luck for the future & hope you will soon have a beautiful healthy baby.
    Lots of love x

  10. Thank you for sharing this post with us, it must have been difficult to write and I hope you found it helpful to write it. It is great to have a more balanced point of view to counteract the hyperbole surrounding this issue.

    Good luck with your journey, I wish you every every success.

    • It has been lovely reading all the positive comments. This blog has encouraged me to share my journey. Thank you x

  11. Pingback: Pre Implantation Genetic Diagnosis: Designer Baby…… « Northern … | Today Headlines

  12. Well done for speaking out… we.ve lost a baby girl and had to go through ICSI and IVF so we can understand some of what you are going through and your fears for the future, it doesn’t matter what other people think, you must do whats best for you,your husband and your future children, and a piece of advice a nurse at the IVF clinic gave me was never give up hope and think positive…. it worked i have beautiful twins and a little extra surpise came along 17 month later xxx good luck xxx

    • Sorry to hear of your loss, I can’t imagine how difficult that must have been.

      It gives me hope when I read positive outcomes for people in similar positions, lovely news that you now have 3 children, hopefully I can follow in your footsteps

      Don’t worry I WILL take your advice and stay positive x

  13. Wishing you and your husband lots of luck in your difficult journey. Articles like this help those of us who have children realise how blessed we really are. It’s amazing the medical developments that have taken place in recent years and I very much hope you can reap the rewards.

  14. Thank you for sharing such an interesting post. I hope it goes some way to informing people of the reality behind the name “PGD IVF”. You’re really brave to share your story, but if it goes even some way to helping clear up misconceptions about the term and to helping other couples like yourself then it’s got to be worth it.

    • I hope blogs about IVF PGD educate the people that only seem to focus on the negative side of things.

      Thank you for posting x

    • You are spot on, the media certainly don’t help the situation. Hopefully they will start focusing more on the positives! We can only hope x

  16. Great post. I got so wound up by a blog post I read which treated the subject as if it was all about gender selection. Stupid really as there’s so much more to the subject, and the work is being devalued by looking at it in this way.
    I wish you the best of luck and hope that this works for you and anyone else going through it. It cannot be easy.

  17. Great to read the other side of this debate : as the mother of two kids with different special needs, I wouldn’t wish them on any child. Luckily mine enjoy good lives, but many children with complex needs do not. Not due to the fault of the parents, but just due to difficulties or medical problems or pain that makes it almost impossible to lead a full life. I wish this couple every happiness for the future xx

  18. My husband carries a faulty gene and developed kidney cancer at 9 days old (Wilms Tumour). He then unknowingly (it wasnt confirmed as Cancer until he was 26)passed the gene onto our daughter. Our daughter had her kidney removed at 5 weeks old and had a course of chemo ( she has just turned 10 and is still under the hospital).

    It is a very rare cancer and even rarer to be familial. We are in a clinical trial programme with the Royal Marsden but are told it could be years before they can diagnose the faulty gene. Our other two children are ultrasound scanned 3 monthly and will be for the next 5 years or so. I don’t know if they are carrying the gene, whether they will develop the cancer whether they will pass it on to their children and so on.

    If they knew what the gene was I would absolutely have had genetic selection and hopefully it will be known when my children are having children because the guilt I feel that they will have to go through what me and hubby did is unbelievable.

    • Thank you for sharing your story, I know it must have been difficult. I can only imagine what you have went through as a family. I hope your daughter is doing well and continues to do so. I also pray that your other children are free from the gene.

      As for the guilt, you have done nothing wrong AT ALL. You or your DH could not have stopped this as you were unaware of the gene.

      You sound like a lovely family and I wish you well. Thank you again xx

  19. As you know, I would do exactly the same thing as you. I wish you all the luck in the world and I hope it all works out for you. It’s a difficult road to go down, and after 3 IVF cycles and a donor cycle where we failed each time, the end of the process is not as straightforward as people think.

    Soo many people just think that if people are doing IVF, that they will end up with babies, when the truth is just so much different. It is hard enough having to live with choices like this, without people who are totally ignorant of the issues behind it putting their tuppeny worth in.

    Wishing you all the best and hoping that a few more people know a little more about PGD with this post.
    x

    • Thank you hon. You have been a great support to me during my lows. I also appreciate all the help and advice you have given me regarding adoption – I know where to go if i get stuck 🙂

      Hope you are well xx

  20. It’s hard to know what to say other than that you are incredibly brave to share your story and I wish you all the love and luck in the world that one day you will have a little one and isn’t it wonderful to know that child will be the most loved and adored child because he or she is so very very wanted. Good luck to you xx

  21. I would do exactly the same as you are trying to do. Nobody would ever want their child to suffer or be harmed in any way, this starts from the moment of conception. Your child’s conception will be ‘helped along’ and why would anyone want in that moment to have a child created whose life will be an uphill struggle? I thank you for writing this post, I was incensed at that other article but knew little about it; you have explained very well.

  22. It is very refreshing to read all the positive comments regarding the blog. I am delighted it has provided people with some understanding of IVF PGD and what it could mean to couples in this very difficult position. I hope in the future when people discuss PGD for gender selection, you will be in a better position to inform them of the benefits that PGD could bring to a child and family.

    Thank you x

  23. I wish this lady success in her treatment. Of course, she should go ahead with the treatment. She shows her wish to be a responsible and loving parent.

    Without IVF I myself would not exist. Simple.

  24. I want to say a big thank you to you Jane for sharing my story. Reading all the positive comments has made me want to document my journey even more. I have made up a new twitter account that will let me do this (still anonymous for now) but I am sure that will change in time x

    I have also made a blog page – http://ivfpgd-hope2011.blogspot.com/

    THANK YOU! x

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