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Conception

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TTC with a disability

11 replies

BabooshkaKate · 04/12/2016 00:43

DP and I had a chat and decided that now is a good time to jump aboard the baby train. I hate my job and want to retain. But a year back at uni and a couple of years in a graduate role would push kids further down the line than either of us would like, because DP has a low sperm count which I assume will only get worse with age. And I worry about us being old and tired and not engaging with DC fully. And we want more than 1, etc. -- I won't go into all the reasons here.

So I think it would be good if I had #1 asap and retrained after. To be honest I would have liked to have been pregnant already but things were on shaky ground with my job for the last year or 2. My job is now dull and not well paid but I can tolerate it, and there is a decent parental leave package. I am saving as much money as I can in the meantime to make sure we have a comfortable buffer.

The trouble is that I have a disability and I was never formally diagnosed. Or if I was, no one told me the name. My own research tells me that this disability is either hereditary or completely random. So I would like to see someone (who??) about getting to the bottom of this and maybe someone who specialises with disabled mothers and pregnancies? If it is a random occurrence then we can throw away the condoms. If not, well, I don't really know what my options are or where to turn to for help and guidance.

DP suggested that I go see the GP but I'm not sure. I think I will, but I was hoping I could speak to someone who had been through similar who could offer advice.

I'm having a lot of feelings and struggling to articulate them. I really want to start a family but I don't want to risk having a disabiled child simply because I was too impatient. This draft saw many revisions so apologies if I am coming across as cold or a bit simple.

OP posts:
Yawninghippo · 04/12/2016 01:57

I'am not disabled myself so I cannot offer advice on that front. However my son has both Down syndrome and a rare bladder malformation. My DP and I are first cousins and so because of the potential risk of us both having similar irregular genes to pass on to a child I went to my GP and requested genetic counselling. This was done at Guys hospital in London but you may have a department closer to you. They went through our combined family history and agreed we have a low risk of any issues reoccurring in a child of our own. I'm now 14 weeks.

I'd recommend the GP as a first port of call. Any referral made for genetic counselling would then lead to further testing for certain risk factors if they deem it necessary. Hope this helps on some level.

Yawninghippo · 04/12/2016 02:00

Also your GP can hopefully find answers for you re your disability in your history or you can request a copy of your notes yourself from them.

Baylisiana · 04/12/2016 02:06

I am sorry OP this is going a bit off topic but...first cousins, Yawning? crikey!

Baylisiana · 04/12/2016 02:10

OP, I don't know whether your condition is one that can be detected in genetic testing but I think you should find out before TTC. It shouldn't take that long and I think going into this as informed as you can be is good. Hopefully it will not be genetic and that will be one less thing to worry about, but if it is you will be able to get advice/support from experts. Good luck Flowers

Yawninghippo · 04/12/2016 02:16

Baylisiana Lol, I know it's not the norm, but it works for us. We only first met as adults so it just seems totally natural to us.

BabooshkaKate · 04/12/2016 11:03

Baylisiana

Yes of course I will wait until I have answers from doctors, regardless of how much I want a baby before Christmas 2017!

I think I will go and ask for genetic counselling, thanks for that. It's good to have a name for what I need so that I can articulate clearly what I am after. Doctors sometimes are a bit funny towards me and, dare I say, don't take me seriously. Like when I asked to see a physiotherapist (as I have a physical disability) and was sent to a psychologist instead who assured me that I was absolutely fine. This was obviously a pack of lies and wasted my time.

OP posts:
YawningHippo · 04/12/2016 11:17

I definitely recommend it, it was a 2 month wait for an appointment. They would have done blood testing there and then if they had needed to in our case. We conceived 2 days later. You may find that the GP is reluctant to refer you if your disability is generally agreed in the medical world to not be hereditary (individual cases will always vary). You can always question this and make a complaint if you really feel they can do more to confirm this in your case. We were referred more due to the potential of the bladder issues reoccurring than the DS as that rarely occurs again and there is screening for it in pregnancy. Good luck!

LifeLong13 · 04/12/2016 11:24

I have EDS3 which is genetically hereditary but can also happen as a one off mutation. I was diagnosed via a specialist 3 years before we had DD & having my diagnosis means we can be referred to the right people easily as they know what they're looking for this time ISYWIM

Baylisiana · 04/12/2016 15:38

Good luck OP, you never know you might still make it for next Xmas! I am sorry you are having to put up with the GP not understanding the nature of your condition, so frustrating.

Yawning I can see that meeting as adults it must feel very different. good luck to you too with your new little one on the way.

BabooshkaKate · 04/12/2016 22:03

Thank you Baylisiana! I was mooching around the shops today and just MELTING at the cute little penguin/santa/elf outfits. Fingers crossed for a speedy referral!

OP posts:
Baylisiana · 04/12/2016 23:31

Little penguin! Smile

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