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PGD- Will I ever have children naturally?

Updated: Feb 26, 2023

{ Preimplantation genetic diagnosis (PGD) is best described as a version of IVF (In vitro fertilisation) it is a method used so that people at risk from Huntington’s Disease can have children without passing the Huntington’s gene to their child.}

Today I had the amazing experience of meeting my best friend’s baby girl! She is a precious little bundle of joy and I am so happy mummy and baby are doing well! I can’t wait for more cuddles!

Today brought on some thoughts about children of my own; will I be able to have children naturally? On a regular basis my friends are posting pictures on social media of their children, and I wonder if one day I will have my own.

When I found out my father had Huntington’s and I was at a 50% risk of inheriting the disease I made the decision not to have children naturally, I was 16 years old when I made this decision. There may not be a cure for Huntington’s disease or many drugs to do anything to help the disease, but we are lucky to have PGD. I believe that having children through PGD can get rid of Huntington’s disease. It makes sense to me, if the disease is passed from your parents, then take out the middle man, if you can’t pass the gene then your children will never know the worry that people like myself face.

Children are something Stephen and I have spoke about, when the situation is not as simple as black and white you have to, I feel like I need to plan for my future, mortgages, life insurance and health care I need to think about what will happen is I test positive and what do I need to do while I can.  I never kept any secrets from Stephen about Huntington’s, he knew almost everything from the beginning, we were together a few months and he came to the annual conference I attend where he heard many talks about Huntington’s. When we first met, my father was with my brother and I for the weekend and Stephen seen dad at one of his worst times. It didn’t scare him away and I will always love him for this. It isn’t easy meeting boyfriends etc when you have such a high connection to Huntington’s. The responsibilities I faced with caring for dad meant that a lot of my time was eaten up! I remember I actually had a boyfriend dump me before because of all the time I spent working for the charity and caring for my father, I didn’t have enough time for the relationship or so he thought. I laugh about situations like this now.

Everyone wants to experience what it is like to carry their own child, conceive their child naturally and have that moment as a couple where you find out your pregnant and going to have a baby of your own. I will admit that I am jealous of people that can do this, although I am grateful that I can have a child knowing they will not inherit the Huntington’s gene, it’s still a child conceived through science.

Huntington’s changes so much in your life and takes so much away from you, it took my youth in the way that I had to care for dad and give up so much. It takes the chance to live your life in the unknowing, by this I mean that I have to get a test to find out if I will die of this horrid disease, where most people can live their life and wait to see what happens. It takes the chance to have children naturally in my opinion, the mature and smart decision I feel for me is to have children through PGD. Not everyone will agree with this and that’s fine, everyone is entitled to their own opinion. I have many friends who have decided that they don’t want to get tested and are going to wait and see what happens. Sometimes people aren’t able to make the choice and find out their pregnant, these things happen. For me, I like to plan and think that PGD is the path for me.

From what i do know about PGD here in Northern Ireland, the NHS pays for one attempt at PGD, but you need to travel over to London, these expenses are not covered. If this attempt doesn’t work then you can appeal and ask for another try, but it all depends on the funding the government have. I think it would be great to see PGD in Northern Ireland, to me it seems like a stressful time! If you have the first attempt through the NHS and even the second, there will come a time you need to pay yourself if it still isn’t working. This worries me, how can you put a price on a child, on your own child, for these reasons I already have savings and a plan in place for payment. Some people are not as lucky and don’t have the funds to keep trying. I would like to see more or a chance for people, PGD has so many stages to it I believe how can only one attempt be given?

I would like to invite anyone who reads my blog to comments of message me with their PGD stories and experiences, you can also contact me through my email, or Facebook page. (I’ll insert the link)

I want to do another blog on PGD so i can inform people on the process and what to expect if they make this choice.

Please remember that this blog is my personal opinion and has no connection to anyone or anything else. I am not medically trained and if you would like more information please get in contact and I can try to give you guidance on who to contact.

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