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To think there should be more advice about this?

(31 Posts)
Neverwasapancakegi7l Mon 09-Oct-17 15:51:30

I'm a type 1 diabetic. My dad is a type 1 diabetic. Now my daughter is a type 1 diabetic.
When planning a pregnancy I asked my consultant about the risks of passing the condition on and she told me it was less than 1% as I was the mother (more risk with a diabetic father), over 11 at diagnosis and older than 25 when having my children. That drops the risk to almost the same as the general population.

However this was not true. With it already in two generations the risk is more like 50% for each child I had. If I'd known I absolutely would not have been so selfish as to have had the children. My daughter now has the same life sentence that I've endured, realistically my quality of life has been reduced by at least 50% and if I develop complications it will only get worse.

Aibu to think there should be more advice around potenatially genetic conditions and how they may be inherited by future children? Less than 1% risk I can justify but if I'd known it was more like 50% there would have been absolutely no way I would have had any children.

madcatwoman61 Mon 09-Oct-17 15:58:52

Yabu to say that your quality of life has reduced by 50%. I have two Type 1 daughters - their quality of life is just fine. Don’t pass this attitude on to your daughter

DesignedForLife Mon 09-Oct-17 16:01:22

But is the risk actually 50%? I'm no expert but I think genetic conditions like this aren't still fully understood so it could be possible you have a gene that is not yet identified as holding higher risk. Most type 1 diabetics I know don't hav diagnosed kids, but saying that I always thought the risk was higher than 1%.

SloeSloeQuickQuickGin Mon 09-Oct-17 16:03:36

Any risk is a risk.

Diabetes won't always be as itis now, advances in medicine, it's perfectly managable. As with any disease, a healthy(ier) lifestyle will keep it under reasonable control

www.diabetes.co.uk/diabetes-and-genetics.html

Type 1 diabetes and genetics - average risks
Related guides


Mother with diabetes increases risk of diabetes by 2%
Father with diabetes increases risk of diabetes by 8%
Both parents with diabetes increases risk by 30%
Brother or sister with diabetes increases risk by 10%
Non-identical twin with diabetes increases risk by 15%
Identical twin with diabetes increases risk by 40%

DesignedForLife Mon 09-Oct-17 16:04:36

Also I'd be pretty devastated if I found out my parents "wouldn't have had me" if they'd have known about genetic risks. I'm asthmatic as are several family members, and there's proven strong genetic links, it truly affects my life, but I'm not going to let that stop me or stop my enjoying life. Id be angry with anyone who told me I should enjoy life 50% less than anyone else.

Neverwasapancakegi7l Mon 09-Oct-17 16:05:02

Personally for me it has reduced my quality of life by 50% at least but my diabetes is brittle and unpredictable. For others it may be not so bad.
They say 4-6% for the father and 10% if you've a sibling. Mother is 2-4% but I was originally told that because of being older when I had the children and my diagnosis being after I turned 11 my risk was slightly lower.

If it is in multiple generations your risk factor hikes up hugely. Apparently we probably have MODY which is carried on one gene which means that you then have a 50% chance of passing that gene on.

Neverwasapancakegi7l Mon 09-Oct-17 16:06:24

It may be manageable but it is also truly truly shit.

DesignedForLife Mon 09-Oct-17 16:10:47

I'm sorry it's so bad for you, it must be devastating to realise your child has the same condition, so it's understandable that you are angry. Has she just been diagnosed?

Neverwasapancakegi7l Mon 09-Oct-17 16:12:10

Yes sad
Obviously I feel dreadful about it. I feel it was incredibly selfish of me to have had them. I rolled the dice but my daughter has the consequences.

BeyondTheMoon Mon 09-Oct-17 16:19:25

I am sorry you have a hard time due to t1 diabetes. How old is your daughter? The consultant may have given you the advice which was thought to be the case 5-10 years ago which is different today? I think you should recognise that you are projecting somewhat too, as your daughter's experience is not likely to be the same as yours. Also, she may come to a different conclusion when she decides if she should try for children so maybe try not to share any of these thoughts with her (not that you would necessarily).

DesignedForLife Mon 09-Oct-17 16:22:37

It's really not your fault. My daughter has been diagnosed with atopy following allergic reaction to nuts (which is terrifying). I'm asthmatic and knew there was a risk of asthma but had never heard of atopy before - no one warned me about the associated issues.

I do agree you should have had better advice beforehand, but you can't go back and change that. Focus instead on getting the best care and advice for your daughter and working on any lifestyle choices that will make her life as good as possible. Please focus on the good and encourage her to think that way too, don't regret your choice to have her. She has a mum who understands the condition and will fight her corner for her and that's can make a world of difference.

QueenAmongstMen Mon 09-Oct-17 16:23:41

I sympathise OP.

I have epilepsy and two young sons. The thought goes around in my head constantly regarding what if I could pass it on to them? I will feel immense guilt if one of them ends up with epilepsy.

If someone said to me prior to trying to conceive that the chance of a child developing epilepsy as a result of me having it was 50% then I also wonder if I would have gone on to have one. It's a horrible thought.

If one of my sons does develop some kind of seizure disorder then like you OP, I will feel they are dealing with the consequences of the choice I made to have a baby and I know I will feel awful for having done it to them flowers

JamPasty Mon 09-Oct-17 16:27:16

It's not your fault and what is done is done - don't feel dreadful or that you were selfish

munchkinmaster Mon 09-Oct-17 16:28:29

My husband is diabetic and was reassured about the risks. Last year a letter dropped through the letter box explaining the risks differently and trying to recruit the kids into a research trial. I was really upset as diabetes is a big deal. I'm sorry about your daughter. It's my worst fear. flowers

I meant to write to the research team to complain about their letter etc but forgot. That's another matter.

Ttbb Mon 09-Oct-17 16:35:11

You can sue for wrongful birth if that's any consolation.

Neverwasapancakegi7l Mon 09-Oct-17 16:36:45

Yes it is trial net. I'm contemplating putting my other dc in it but maybe its better not knowing. After all knowing early doesn't change it does it?
My daughter is 1, but I guess the advice dates from when I had my son which is getting on for a decade.

Neverwasapancakegi7l Mon 09-Oct-17 16:41:33

Thank you designed

Vanillaradio Mon 09-Oct-17 16:43:08

Op I sympathise. I am t1 diabetic and the thought of my son having the same terrifies me.
But, I would rather be here and have diabetes than not be here. I believe that my son would say the same even if diagnosed (he is only 3 so can't ask him!).
It is not your fault , you took the decision on the information you had. And your daughter I believe would also rather be here than not.
Diabetes is shit but it becomes more manageable all the time. I think it will not be a life sentence for your daughter, I think that there will be either a cure or way of managing with no human input (artificial pancreas etc).
It is early days and a horrible shock. Be kind to yourself. It really isn't your fault.

Smallplant Mon 09-Oct-17 16:43:17

Utterly utterly ridiculous post OP, and some of these replies. Type 1 diabetes is a completely manageable condition. It doesn't have to impact quality of life or length of life at all if managed properly.

To say that you would rather your child hadn't been born if you knew she'd have the condition is hugely insulting to other people with Type 1, and their relatives. Absurd and damaging attitude which you are now likely to pass on to your daughter.

I'd go as far to say you passing on your negative attitude is more harmful to your daughter than the condition itself. I hope she gets some unbiased information from her diabetic nurse to balance out what you'll be telling her. YABU

Neverwasapancakegi7l Mon 09-Oct-17 16:48:33

Do you have t1 small
Because whilst it may be manageable to a degree it is a 24/7 job. Every time you eat, sleep, exercise, have a change in routine, are ill, are stressed, what hormones are floating about etc basically every little thing affects it.
It is manageable. With a huge amount of work, worry and dedication because you are treating it wit a drug that can easily kill you if you get it wrong. Blood sugars that are too high cause problems further up the road. Blood sugars that are too low - well they are an immediate problem.

Neverwasapancakegi7l Mon 09-Oct-17 16:50:01

And you misunderstand. I'd rather my daughter was here. But for her sake - because let me tell you - blood tests and injections and set changes and being woken in the night to have sugars tested IS suffering for a toddler. She has no idea what the hell is going on.

munchkinmaster Mon 09-Oct-17 17:06:54

We said no to the trial. I can't remember all the thinking we did but I think we would have known whether the kids would def get a diagnosis in next 25 years. Whilst a negative would have been brilliant the other outcome (knowing our kids would def get it before they were 30) would have been too upsetting for me and I think have impacted on my pareting. We felt that the potential side effects of metformin outweighed the risks. We might revisit in a few years when the trial is further on.

munchkinmaster Mon 09-Oct-17 17:08:03

You know there is probably a psychologist attached to your child's diabetes team you can book a few sessions with to talk about how you feel and are coping.

Neverwasapancakegi7l Mon 09-Oct-17 17:09:16

You have to have them checked every year as the antibody status can change quite quickly. I read that even a negative result wasn't always permanent. It's shit. I hope your dc avoid it.

RandomMess Mon 09-Oct-17 17:09:57

flowers

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