Need to get some reassurance about going ahead with TTC with spinal problems - please

[Wisteria]

Says it all really, I just wanted to hear some balanced advice on how I should approach it. I'm 34, 2dds already but that was before the spine got too bad. I've had a fusion and a fusion removal, suffer 24/7 with chronic pain and have a condition called spondyliesthesis - not spondylosis.
Seems daft I know to want more dcs but my dp doesn't have any and it's very important to him.
Any one have any experience and what is the hardest part? The pg, birth or just trying to keep up with the baby?

No takers?

sorry not able to help but did not want this to go unanswered... do you have support groups for your condition to ask -- I used ARC when I was to TTC as I have arthritis and it was helpful talking to others with same condition.

Also do you have a consultant -- what do they think?

ooh - thank you zzmum, I have arthritis in my hips and knees too.

I was under a consultant but as they can't do anything for me unless I have another op (which I don't want as most of the pain is caused by the ops/ scar tissue/ damaged nerves etc) they have let me go until I call them IYSWIM. Apparently the risks are too high for another op unless I'm desperate.

I know the medical opinion and I am going against it, I really just wanted to hear from others who have coped with their disabilities and had children regardless. Did you have arthritis before you had dcs?

Hello.
Sorry, I can't answer your specific enquiry, but can say that I have had RA since I was about 18/19 years old - well before I had my 2 DC. In my case, for both pregnancies, I went into remission, but the RA came back with a vengence.
My DS was 9lb 10oz, and has always been big - he's 2 and a half now and about 3'3", maybe more. I struggle more with him - my DD (now 7) was very content and placid.
I have found Mumsnet to be very helpful as people come up with all sorts of ideas and alternatives to get round problems.
This year I have already had two ops and am waiting for a wrist fusion, which will mean 6-8 weeks in plaster - oh joy! I have had to wait for my DS to "grow older", before even contemplating surgery - I also care for my mum, who has RA. But if I can get sorted out, things should become easier.
I do not get on with being pregnant, both births were c-sections, and the hardest part I find is keeping up with my DS - I cannot hold his hand firmly, and I can not pick him up if he goes floppy. Thankfully I have some great friends who help out, and my DH, of course, when he's home.
There are devices out there to help, but they cost and you have to track them down - or you devise your own! Good luck to you.

Wisteria, I don't have arthritis, but I did have neurosurgery on my spine as a child which also quite severely affected my left leg and foot. As a consequence I do have mobility problems, but nothing like you. I use my Stokke Xplory as a walking frame, even when DS (20 mo) isn't in it.

I did have fantastic NHS physio advice all through my pg with DS and am hoping for the same this time because I can feel my back is getting tired and sore already (at 11 weeks). I found that aquantatal was really helpful in easing things too, even it it was just for 3/4 of an hour a week.

I think quite a bit of it can be down to attitude. If you want something enough, you will get through it and look on it positively.

My current pg was a bit of a surprise, but now I know things are as ok as they can be at this time, I'm happy and will just have to get on with it!

Thank you so much, I suppose I really just wanted to hear how it is for others - all I hear is the doom and gloom of 'you could end up in a wheelchair' and 'you've already got 2 lovely daughters, why do you want to take the risk' etc etc. The thing is, I am broody as hell and my dp hasn't got his own children - he's fab with mine but it's not the same is it?
StrangelyBzar - that sounds very painful, it must make life so much harder in your hands and wrists, you are an inspiration as if you can go through all that and it works then I'm sure I can. I have great friends here, although no family which is a shame.

PigeonPie - it does sound pretty similar to be honest, I should think the residual pain is much the same. I don't need a frame or sticks since I started Taichi for arthritis and Pilates, it seems to be helping strengthen me up. I do sometimes wish for a buggy again, especially when in queues as I can only stand still for about 3-5mins, can walk for miles though!

So the big question - would you get pregnant again, knowing what you know now?

Oh dear, that is a difficult one as really, you are the only one who knows how you think you can cope and weighing up things objectively when your heart is set is very hard.

Is it a real likelihood that being pregnant / having a baby would make you wheelchair-bound or are medics just trying to frighten you? Can you manage your pain without too much medication while you are pg? How much running around after your older two do you have to do?

DS's birth was assisted with Syntocinon and so, although it was hard, I managed without a CS an an epidural (would have had to have had a general). Would you want a CS or could you manage a 'natural' birth?

DS is now 20mo and is getting slightly easier in some ways. I don't have to carry him as much now as I've got him walking as much as possible and I always take the pushchair out with us for me to hold on to!

I suppose these points are just some things for you to start thinking about. Just thought though, what if you'd got pg by accident? How would people / medics react then (not thinking it should be an accident!). My hospital (JR in Oxford) is absolutely fantastic at supporting me and I hope your's would be too.

Well, would I get pregnant again, knowing what I know now? It's funny, because just the other day I said to someone, "if I knew when I was younger, what I know now, I would have had children earlier!" We were a little bit late on - I was 33 when I had my DD and 37 when I had my DS. But that was just how it happened! Mind you, I also said that if I had had my DS first, I may not have gone on to have another! He is absolutely gorgeous and lovely, and I would not be without him, but he's very strong and very fast and either an angel or a devil! But he makes me laugh such a lot. Thank goodness for my lovely, sensible daughter! I couldn't have had two, more different children. Doesn't make life so interesting?
Thank you for your kind comments - don't know about being an inspiration - it's the children that keep me going.
As for the wheelchair thing - many, many years ago, my mum was told the same. She was told that within two years she would be wheelchair bound with the RA. Well, that must have been 20 years ago, and, thankfully, she will not be defeated. She cannot walk far, but she keeps going.
No, I do not wish for any more children, but then I'm 40 and have been married for 11 years. Totally different circumstances to you. I like the advice PigeonPie gave and I think you have to do what you feel is right for you and your partner. I worry (and did before pregnancy) that the RA will pass down to my DC, but I cannot live my life with ifs and buts, just the here and now. It may never happen, and technology is advancing everyday, to help overcome all these diseases and physical problems. I shall stop ranting now.
I would ask myself, "what is the absolutely worst thing that could happen?", and if I can deal with that, then I would go for it. Have lots of fun! [

I just wanted to thank you for your comments - it is reassuring to know I'm not the only one and that other people have managed.
Apparently it is a 'risk' that I will be wheelchair bound. That means nothing to me tbh as when I was 17 they told me I'd be in a wheelchair by the age of 21 and I'm now 34 and still walk upright without limping too often so what do they know??
Ultimately, I can cope with a difficult pg and birth but just worry about picking them up and maintaining a good mood when in pain but I have to do that anyway, my dcs at the moment are 13 and 11. Still I have plenty of food for thought and will look into the different birth scenarios.

Thanks again xx

Well, let us know how you get on

hi just had the guts to join a forum and actually go to the disabled parents section. Sound silly but it is a step further to accepting my disability. I have recently been registered disabled as I have nuerology problems with my back that affects my legs and back and have recently had nuero surgery on my spine.I have been told not to have any more children due to my problems at the risk of being wheelchair bound. However I must say I have five children two of which are my step children who live with me full time and don't see their biological. My youngest is one year and I also have a two year old my others are 12,12 and 13. It is not an easy decision not to have any more children I am keeping my options open but my DH worries too much. My advise is trust yourself and make sure you have a good support net work before going ahead. Sorry for babbling!

xx

Madmum - welcome! It's not silly at all to take time to come to terms with disability - it has taken me more than 20 years to realise that even a blue badge will make my quality of life better and to accept the help that is available (I'm quite independent ) so, good luck

Hi I've just joined the forum today and this is the first thread I've clicked on.

I'm 35 and 25 weeks pregnant with my first child. I also have chronic pain in my spine, neck and shoulders following surgery for curvature of the spine and I have reduced mobility in my hip since having cancer surgery a couple of years ago.

I think the reason I've waited so long, is mainly because I've been trying to prepare myself for how hard it's going to be looking after a baby and a toddler. To be honest, the pregnancy pain doesn't worry me too much. I can rest as much as I need to now, I just worry how I'm going to cope once she arrives. I'm actually surprised that my back pain isn't worse than it is - although I'm sure it's going to get really hard towards the end. I have to say, the 3 months of morning sickness were far worse than any level of back pain I can imagine!!!

I think you need to ask yourself, is the thought of having a baby and the problems that may arise scarier than the thought of never having another baby.

Just to add, the body releases the hormone relaxin which can often improve some chronic conditions and send them into remission. Unfortunately for me it went the other way and I had what I call 'horrible hormonal back pain' for the first 3 months, but that's subsided now thankfully.

Sorry, I've probably rambled a bit and I've still got quite a few weeks to go!

Good luck to any disabled ladies considering having a baby. I know a couple of children with disabled parents and they are some of the most caring, grounded people you could hope to meet.