Reply to "Passing on the gene"

Hi everyone,

I've only just joined and I thought I would leave a comment as a FAP parent. Not sure if it will help.

I never planned to be a parent as I was determined to rid the gene from my family. I fell pregnant unexpectedly and the choice of IVF gene manipulation was taken away. Unfortunately, my daughter does have the gene. As a parent you feel guilty for something you have passed down. But with the support of the professionals such as genetic counsellors, I was made to feel like a good human being.

My family discovered the gene when family members were diagnosed with bowel cancer around the same age as each other after they thought they had piles. By that point my mum  and uncle were teenagers and had to have most of their large intestine removed due to significant amount if polyps. Unfortunately, science wasn't advanced then as it is now and we learned the hard way that polyps could occur in the upper tract. This led to my mother passing away 17 years ago

My mum and dad were always honest with me about my genetic condition. They chose to conceive knowing the odds. They literally got 50/50 as my younger sister doesn't have it but I do. I was raised to expect the screenings and possible surgeries such as partial removal of intestine. I found that helped me understand at such a young age especially when it came to my first screening at 11 years old. It has prepared me for my future and my daughters. There may be a curve ball like a health scare or in my case an additional surgery we didn't anticipate. However, I do not regret my decision to carry through with my pregnancy.

Before my mother passed, we discussed the reasoning behind her decision to try to conceive despite knowing about the gene. She explained that we all pass on defects or illness in some way but because it's the dreaded c, we tend to panic more. Not everyone will agree with this and I accept that but our gene doesn't necessarily mean cancer. We aren't bad people for choosing to conceive. I look at it as though my file in on high alert with medical professionals and combine that with my regular check ups, I'm in a better position than most of the population. Any issues will be detected early. As long as any individual is in full knowledge of their condition and potential impact.

We also researched about fertility options for my future children. We spoke to specialists who said that they could harvest my eggs and get rid if any that contain the genetic mutation. That way any eggs fertilised would be without the chromosome defect. Surrogacy was another option if my womb was not a good environment. At 16, I felt I had options.

I strongly believe it's up to every individual/ couple and we cannot judge for what are difficult situations for others. Just make sure any children with FAP have a large network of supportive family members who also understand the gene. I was able to lean upon other adults when my mum died after I turned 16.

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