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.
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?