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to have a baby or not

panther
panther Member Posts: 251 Courageous
Hi

I just wondered if there were any people on here that have got cp but are also parents, instead of parents wanting advice regarding their child with cp!!

I've got spastic diplegia cp I can walk but use a wheelchair some of the time. I've also got epilepsy.

My partner and I have decided that we want to try for a baby. Have been to see the gp and have had some of my medication stopped and am waiting to hear if I can carry on taking my dantrolene and my epilepsy medications or not.

Just wondered how other women with cp have got on during pregnancy did you have to stop medications, and how you've coped looking after a baby/child since.

Helen

Comments

  • Tash026
    Tash026 Member Posts: 10 Connected
    I have spastic dipeglia cp, and my husband and I have been married for one year. We have decided not to have children, but there are lots of people with disabilities who do have them. Go with whats right for you. x
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    I am a mum of a 2 year old boy/girl twins, one with quad CP, and a 4 year old girl. I had IVF to have my family so not only was having kids an active choice, but a damned long and painful journey! I don't have a physical disability so I can't give advice on the practical problems you will need to overcome. What I can say is if you have love to give a child and you want to both want to be parents then as long as it wouldn't be detrimental to your health I would say GO FOR IT!! Alison Lapper doesn't have arms or legs and she is a great mother (see http://www.bbc.co.uk/ouch/interviews/child_of_our_time_alison_lapper_1037.shtml). You will find ways of overcoming problems, you will find people to help and you will meet the challenges head on - you do this because you will love your child. I know you have real challenges ahead - ones that I don't have to face, but I didn't think I could rise to the challenge of being a mum to 3 kids under the age of 4, one with a physical disability that means that he's not sitting unaided, crawling or walking. It's not easy, but I AM managing. Kids are accepting of the way things are and you will work together to make it work for you all.

    You have to make the right decision for you but I can only tell you that having kids was the BEST thing I ever did and they give me and my hubby such joy. I wish you lots of love and luck in coming to the right decision for you xxx
  • panther
    panther Member Posts: 251 Courageous
    Hi

    Thank you for your reply I will look at the link as well. Yes I know whatever happens it will be full of challenges but I guess there is just as many even if you become a parent and you don't have a disability.

    I think our decision has already been made we've seen the gp and I've come off of 2 of my tablets and in the process of coming off the 3rd (and suffering the side effects!!) but I keep in the back of my mind it is for a good reason.

    Unfortunately I can't come off all my medication as I've been advised to stay on my epilepsy medication, so we've been advised that if I do become pregnant we'd need to wait until the 20 week scan to rule out any problems caused by the tablets.

    So I guess it's now just a case of trying and seeing what happens. Fingers crossed etc lol!!
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    Wow - things are moving forward then! It sucks that you have to go through the side effects of coming off medication in order to make this happen - most parents to be don't have to deal with that. I can certainly comiserate - the drugs I took to make falling pregnant possible (and the daily injections into the muscles in my bottom) made me feel horrible. With regard to the epilepsy drugs - you have to take them so you'll just have to go with it and keep your fingers crossed. There are millions of epilepsy sufferers who have done the same and gone on to have successful pregnancies and healthy kids so just be positive and keep believing in miracles.

    Thinking of you at the start of your exciting journey xxxx
  • panther
    panther Member Posts: 251 Courageous
    Yes things have moved on in the last 3 weeks since I first put this post in lol! In one sense it's scarey but in another I know it's something my partner and I want to do so I'm sure we will find a way to cope.

    I think part of me is scared because it's the unkown and to be honest it's something I didn't think I would be in a position to try and do.
    I see the neurologist on the 13th August although he has said I need to stay on the epilepsy drugs he also mentioned to my gp if I wanted to come off them it's something he will discuss with us in clinic so we will see what he says.

    Will let you know if this journey actually gets started properly!! xxx
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    Wishing you tonnes of luck - parenthood is quite daunting, whatever your circumstances, but so so worth it! Good luck with the Neuro - he'll be able to talk through the pros and cons of the epilepsy drugs and then you can make a really informed choice.

    I've been at a Conductive Education holiday session with Tom this morning - a really exhausting 3 1/2 hour session for him but he worked SO hard. He's just starting to gain some sitting balance and now we are working on improving his core strength, his active sitting and trying hard to help him learn to crawl. He finds it really hard to weight bear on his arms so spends quite a lot of time face-planting the floor. Bless him.

    Keep me posted with any exciting news - and enjoy trying! xxx
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    Hi hon,

    Yes, cushions and mats are all over the house and if he's sitting still with his hands on his knees he can sit for ages, but as soon as he moves his hand or something on the tv makes him jump he's over! His twin knocks him over frequently too - sometimes accidentally and sometimes not! How does your CP affect you? Have you got any words of wisdom for us?!

    It is nice for me to have someone to talk to too - anytime I can help with anything just let me know.

    Hugs

    Maria x
  • panther
    panther Member Posts: 251 Courageous
    Thanks I will do it will be good to have someone to talk to.
    You talking about your son sitting reminds me of something my mum and dad say they had to do to help me learn to sit.

    Apparently they used to prop me up against the back of the sofa surrounded by cushions in case I tobbled over every day. I screamed the whole time according to them!! But it worked in the end

    Take care thank you for all your advice hope to talk some more soon xx
  • Katherine Hayward
    Katherine Hayward Member Posts: 74
    Hi I have quad cerebral palsy,hydrocephalus with a VP shunt, and am registered blind. I use an electric wheelchair and need help with everything. I have been with my partner for six years four months now and we are considering having a family. In my case , my birth was particularly traumatic because my mum did not know she was going to be having twins and my sister was born and then died nine days later. We were both born at 29 weeks, and the standard and quality of the care she, me and my sister received was not good. . I have also heard and read a lot of stories about disabled people having kids and I think that is what has inspired me. I've already talked to my neurologist, who thinks that with the right care and attention during all the stages of the pregnancy I should be okay but because of my shunt she advised me me that a Caesarian will be best for me. Of course I will have to take all the precautions regarding medication, but it is a real wish of mine to have children one day.

    Katherine
  • panther
    panther Member Posts: 251 Courageous
    Hi Maria

    I have spastic diplegia cp that affects my both of my legs and my balance. As I've got older I've started to use a manual wheelchair with battery powered wheels when I go out, as I started to get a lot of fatigue.

    I don't remember much of very young childhood I remeber lots of physio both locally and at great ormand street hospital. I have got an older sister and I guess that made me push myself more because I wanted to do all that she was doing!!

    I think from my parents point of view everything just took alot of fight and determination on their part both on the medical side of things and with education when I started school. I suppose also alot of patience from them as well due to the amount of physio they were doing twice a day. My advice would be try and make any physio or things like that fun. I know as I got to about 4 or 5 I didn't like physio, maybe if I felt it had been more fun I might not of been such a nightmare while they were doing it!!

    I will think see if I can remember anything else that might be useful, though I think now there is alot more support and different things that can help than what there used to be. It's as you get older it gets harder to get the support and treatment.
  • panther
    panther Member Posts: 251 Courageous
    Hi Katherine

    Your post was interesting one of the problems I have is although I see a neurologist I see him for my epilepsy and not for my cp.

    I haven't been under any medical person other than my gp since the age of 16. Although the gp asked the neurologist for advice on one of the tablets I take for my cp the neurologist ignored that part of his fax and only took notice of the part about my epilepsy. Even though I've spoken to his secretary every day for 2 weeks and my doctors surgery have tried to talk to him twice.

    I spoke to a different gp last week who advised I come off this particulary medication so I'm now off 3 different medications and am just taking the ones for my epilepsy.

    All my gp has advised is that the first 2 scans are going to be the most important for me because of the medication and because of the meds I may end up having to consider a termination if a serious problem is found in these early scans.

    Because at present I'm not getting much advice I decided to start this topic and see what others said.

    Helen
  • Katherine Hayward
    Katherine Hayward Member Posts: 74
    Hi Helen, thanks for your post. I've not talked to many people in a lot of detail about pregnancy-related issues yet, but when i do, I want to be sure I've got the right background info to make good decisions for me. What I've been advised on several occasions though is to take folic acid ( there's loads of info about it on the web) as hydrocephalus is a neural tube defect. It can help against the prevention of CP and other disabilities, but in my case, there were a lot of risk factors. I find NetDoctor is a great site for all things medical.
    I've been assured that there's no need for me to worry that the baby may have disabilities as my case was coincidence (ie my disabilities are not genetic) but there may be some chance I have twins, as there are twins in my family (my gran is a twin), I'm going to take all the precautions I can in any case. I'd also advise find out as much as possible about if there's disability in your family, twins etc so you can tell the Dr. Maybe you could go to another neurologist. Or a gynecologist?
    Katherine
  • redchicken43
    redchicken43 Member Posts: 48 Pioneering
    Im not a women so can't comment on coming off any kind of medication, but I do have CP with 2 healthy children. They are the best things in the world and would recommed being a parent to anybody who believes that they are physically fit to have them.

    Nobody knows what to do when you first have a baby, abled bodied or not, so everybody is in the same boat.

    Just go for it!!
  • redchicken43
    redchicken43 Member Posts: 48 Pioneering
    Hi Panther'

    I think that I am lucky in that my CP is mild and I try to not let it effect me too much, but I know that it probably will as I get older as the mechanics of how I move are very different to everybody elses, but for the moment its not too bad.

    Getting back to the issue of children its also not effected me greatly other than when they were smaller I was a little bit reluctant to carry them about, but its no show stopper.

    The kids have been great and understand that Dad walks differently to everybody else and their friends have been good as I was concerned that they would be picked on at school.

    Either way you will find that you have to adapt and you do the best that you can.

    I have always been a believer in that ones biggest weakness can also be their greatest strength.

    Nobody knows whats around the corner and the long-term effects of CP are unknown to me so I will probably face challenges in the years to come. But today at this moment in time, things are okay.

    My kids are 10 & 6.

    Hope this helps.
  • panther
    panther Member Posts: 251 Courageous
    Hi Katherine

    The gp has already started me on folic acid so have got that one covered. Unfortunately I've been advised there aren't any really good neurologists in my area.

    Also the gp doesn't feel I need to see anyone medically for my cp as he feels everything that could be done has already been done in the past. Although the neurologist I see does try to interfer with my cp medication as he doesn't like the tablets I've been taking for the spasms in my legs and the tight muscles. He's also hopeless at getting back to you with any information we have been trying to get answers from him regarding my medication for over 2 weeks now. Normally he likes to complain about my cp medication but when the gp faxed him for advice he only answered the part about my epilepsy medication!!

    On the advice of another gp I have now come off all my cp medication I'm on my 2nd day of having no cp meds so have got to see how things go. This time of year isn't normally too bad, but the damp and cold are harder but hopefully it will be worth going through if I do become pregnant.

    Helen
  • Katherine Hayward
    Katherine Hayward Member Posts: 74
    Hi Helen, yes I agree the weather this time of year helps. I'm not sure what the dr will say re my meds as my spasms affect my whole body, but we will see. I really suffer in the winter re colds, aches and pains plus spasms. I have seizures all year round which havent been investigated yet. There's no one except me in my family who is disabled and a parent so there's no one there to ask about anything related to this. I've had ultrasounds which show everything's ok internally: this was checked due to my really irregular, heavy painful period cycle. Yes it's all ok , but some people seem surprised when we tell of our plan to have a baby. At least I know from what you're saying I'm on the right track re advice from drs. I wish you good luck.
    Katherine
  • panther
    panther Member Posts: 251 Courageous
    Hi redchicken

    Did you find you had to find different ways to do things with your children because of your cp? If you did what sort of things did you do?

    I don't know many people with cp and I don't know anyone with cp that has children I know things are strange to everyone with a first child. I'm just looking to get some ideas and solutions to some of the extra challenges I might face being a parent with cp.

    If you can throw any light on some of the possible issues and solutions I would be grateful
  • panther
    panther Member Posts: 251 Courageous
    Hi Katherine

    Other than anyone on here that reads this post we have only told 2 close female friends, and the gp. As the gp contacted the neurologist he now knows we are trying to concieve.

    We have decided not to say anything to anyone else until I become pregnant. And if we are able to as long as I don't show too much we don't want to say anything until the 20 week scan has been done. Because the gp told us that scan will be the most important to us and we may have to after that make a decision on whether to terminate depending on if the scan shows any major problems because of my epilepsy medication.

    Good luck when you also start trying!!
    Helen
  • SpecialEdition
    SpecialEdition Member Posts: 1
    Hi Helen,

    I read your threat 'to have a baby or not' and I wanted to get in touch with you regarding a documentary I am developing.

    I am a producer at a television company called Special Edition Films and we specialise in access based documentaries for the BBC, ITV, Channel 4 and Channel 5. We have produced a number of sensitive medical based documentaries on subjects including heart transplantation, cystic fibrosis and treacher-collins syndrome.

    We are currently developing a new documentary for BBC3 about 'Disability, Pregnancy and Parenthood'. The documentary will highlight how pregnancy and parenthood are affected by disability and the trials and challenges that disabled parents face.

    We are currently looking to speak to people who are interested in talking to us about our documentary and who potentially might be interested in taking part. It is an opportunity to tell their story in their own words and help highlight an issues that needs addressing.

    We would like to speak to pregnant women and new mums who are affected by disability.

    if you are interested in talking to me please call me on 0208 960 1446 or email me on [email protected]

    I look forward to hearing you.

    Best,

    Miles Blayden-Ryall
    Special Edition Films
  • panther
    panther Member Posts: 251 Courageous
    Hi All

    Jus a quick update on this post as many of you were interested, unfortunately we have had to make the decision to stop trying for a baby.

    We found when I was off all the medication for my cp major fatigue kicked in I was expecting pain but got fatigue instead and also I kept falling alot I was having up to 4 or 5 falls a day and was getting covered in bruises!!

    We talked about it at length and said the way things were going I could end up miscarrying if I was pregnant and how would I/we cope if that happened, because no doubt I would blame myself if it was to happen could I live with that.

    We knew there were things we could put in place to stop my falls like using my wheelchair more. But there was nothing we could put in place to stop my seizures.
    As I do things in my seizures that I have no knowledge of doing we said how would I know I hadn't put the babyat risk during a seizure and again how guilty would I feel if something was to happen.

    Recently I had a seizure were I walked out the front door, leaving it wide open in the early hours in the morning and started walking down the path in my nightdress. Again after that we decided there was nothing we could do to prevent me possibly doing that again when my partner wasn't at home and what if I did that leaving the baby in the house and again something happend. Could we cope with the possibilty that social services could end up involved and possibly take the baby into care.

    It was a hard decision to make but in the end we decided there were too many areas where I was either putting myself or a child at risk. Also my partner didn't like to see how I was off my medication because he knew there was nothing he could do to help prevent the overwelming fatigue and the number of falls. He said while he was at work he was constantly worried about how many falls I may be having and if I had ended up with any injuries well he wasn't there.

    Hope this post helps anyone who is considering trying for a baby to possibly see what a major affect coming off any medication you may be on could have. The affects for me certainly weren't what I was expecting. I lasted about a 2 months off medication then felt I had no choice but to go back on it as I really wasn't happy with the situation.

    It's been hard but I guess for us in the long run we've made the right decision. Good luck for anyone out there that is trying!

    Helen
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    Oh Helen hon, you've been through it! Nothing is worth putting yourself in danger so it's the right decision... Just sorry that you didn't get what you wanted. Love & hugs xxxx Maria
  • panther
    panther Member Posts: 251 Courageous
    Hi Maria

    I guess we were going into the unknown when we started this plan because neither of us knew how things would be with me off my medication.
    Unfortunately things didn't go as we would of liked but I guess it was better for us to find this out early on and before I conceived rather than have the possiblity that I could of ended up putting myself or the baby/child at risk.
    One of the things we kept saying was once a baby is here you can't take it back!! I was also worried because I didn't want the child to end up being a young carer if my health got worse.

    I just hope that this post maybe helps others who are thinking of starting a family think of some of the things we found we suddenly had to think about.

    It was good to talk to you and if I can give you any advice as your son gets older I will try and answer posts to you.

    Love Helen xxx
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    Hi Helen

    It's just sucks that you have had to be so rational and think things through so hard. I would very much like your guidance re: Tom - I don't know anyone who can help me along the way so I'll keep in contact! The new thing is that we have discovered that he can cycle a special needs trike! He's taken to telling everyone and anyone that he is Bradley Wiggins! Yesterday he came out with the all time classic dinnertime conversation-stopper "I am God" - to which I replied "no you aren't Tom" and he replied "yes, I am Mummy" - I laughed so hard I nearly wet myself. The other day he accidentally rocked forward while sitting cross-legged on the floor in his bedroom and face-planted the floor while I had my back turned and when I jokingly asked 'what are you doing Tom?!" he said "I fainted". He's quite the little comedian! Take care you xxx
  • panther
    panther Member Posts: 251 Courageous
    Ahh bless him. It's good that he can ride the trike I never got past having the stabilizers taken off my bike, I had problems doing the pedals I kept doing them backwards.

    When I was older we got an exercise bike which I eventually learnt to do because there was strapes for your feet to go into but even then I'd have times when I forgot and did the pedals backwards!!

    If Tom has a sense of humour it will get you far and help get you and him through the difficult times. I've found being able to laugh about some of the situations I've been in helps.

    If you want to start a different post so we can talk easier just let me know what you've called it!! It's a pity that you can no longer exchange email addresses on here it would be so much easier.

    Take care both of you give Tom a hug from me xx
  • Hymerkar
    Hymerkar Member Posts: 63 Courageous
    Helen, I havent been on here for a while, and have just sat and read this thread from the start. All the way through I hoped to read by then end you were pregnant because I know it is something you have wanted for quite some time. I was really sorry and upset to read that you have had to decide not to try for a baby. I know how hard that must have been for you both.

    Take care hun, and keep your chin up XX
  • katiewombat
    katiewombat Member Posts: 2 Listener
    Hi I am new to the forum and this is the first poat I have read, but i would really like to reply. I have Ataxic Diplegic CP and can walk, well fall on my bum alot. Having children is the best thing I have ever done. I have 4 of the terrors. I am not going to pretend it is easy, but the are my world.
    I do struggle with things like cooking for them and can't run after them ect and we have the odd accident and I do get very tired, but then I also have Fibro and ME too.

    Good luck on your journey into parenthood.

    Katie
  • panther
    panther Member Posts: 251 Courageous
    Hi Karen

    It's good to hear from you hun how have you been?

    Yes this was a hard decision in the end and yes we would of liked a different outcome in the long run. But I guess it was better to make this decision now than to find out all this once I was pregnant or after the baby was born.

    I guess I hadn't realised just how much of an effect the tablets were having in making life a bit easier. If anything there have been times when I've felt they weren't doing anything! But having now seen the number of falls etc I was having without them I now know otherwise.

    Hope all is well with you take care xxx
  • christina
    christina Member Posts: 1
    edited January 2015
    I don't have a physical disability but I do have bipolar disorder, my husband has c.p and I really want to have children. He is really scared about becoming a father because he doesn't know what he will be like, he wants to talk to other dads in the same position. I'm trying to help him but I think he needs someone in his position
  • sweetestmoondust
    sweetestmoondust Member Posts: 5
    Hi I am a mum with cp diapleagic but mild. I have healthy twins. I find that having a routine really helps. So even if the kids have a busy social life I have a routine so no matter what I manage to rest. I have a cleaner who comes every two weeks to keep on top of the household chores that my husband or I can't or don't have time to do. I also have a gardener who comes to do it twice a month between march and Nov but you need to look into what's around you and know what you can physically do. My parents taught me one thing which is there is no such word as can't just a way round things. Work out what's best for your situation
  • Community_Scope
    Community_Scope Posts: 79

    Scope community team

    Just wanted to let everybody know that we have started a Pregnancy and Parenthood tips section on the community, and would love to hear your suggestions and ideas: https://community.scope.org.uk/tips/pregnancy-childbirth
  • Gemstr
    Gemstr Member Posts: 19 Courageous
    I don't know whether this is an old thread and someone will read this message I am 12weeks pregnant and have cerebral palsy I walk with 2 sticks and have no balance. I want to keep my baby desperately but haven't enjoyed the pregnancy one bit and I am constantly up as I worry I won't be able to lift my baby. I really don't know what to do. Has anyone been in a similar situation please help.
  • Please keep the child. Your family will be willing to help you I myself have cp and with the love and help of my family meaning my husband I kept my twins . who are a treasure and understand more about the condition the older they get. Get a network of people around you to
  • the_velvet_girl
    the_velvet_girl Member Posts: 107 Courageous
    Hello Gemstr, I don't have kids but enjoy watching my friends kids even though I find it very tiring! I can't carry the kids and walk at the same time so I used a sling and a buggy in the house when the kids were wee. I could lift the kids from the floor sitting on a low stool up onto my knee. One of my friends had a big Silver Cross Balmoral style pram which I could use to balance when walking in the ice and snow although I did use taxis a lot when the weather was bad. The drivers all got to know me and would lift the car seat in/out of taxi and set up travel system for me. Have you thought about a nanny or au pair I can't have my own kids but would like to adopt some day. I'll need help due to my fatigue levels and will only work 2-3 days a week.

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