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Post by max on Jan 8, 2007 18:49:18 GMT
How many of you have had babies since you had your special LO? Caleb is my first baby so now of course I have been told that any further babies have a higher chance of having downs too. Now Caleb is so unaffected as yet that it's not a problem at all, though of course if the Downs could be taken away I would get rid of it for his sake - if you get my drift! However another baby might not be so lucky and be really ill.
How did any of you decide to have more kids? I don't want loads but I also don't want to say never... It seems to take the pleasure out of planning a family when you have a fear hanging over you. Still, Caleb is an utter joy and the light of my life! He is 15 weeks old and 14lb 6 as of today!!! What a chunker eh? We've never had any problems with breast feeding!
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Post by shirley on Jan 8, 2007 18:57:00 GMT
Hi Max I know how you feel, we really would like to have more children but as you say its the fear of something going wrong. Grace is 8 weeks today and currently weighs 8lb 2. She seems so unaffected also. The physio was with us today and she says she is doing everything that a 'normal' baby would be doing, in fact some others arent even as advanced as grace.
From what I do know of downs so far I have heard that it is good for them to grow up with a sibling close to their own age as it helps with developmental skills. At the mo we have decided to wait at least another year when Grace has had her surgery done before she start thinking about any more. And in the meantime we are just going to enjoy grace to the fullest.
You are so lucky not to haveany problems feeding, with Grace it is a real achievment for her to finish a 4oz bottle.
Shirley & Grace xx
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Post by pinkshell1110 on Jan 8, 2007 20:33:57 GMT
it was a shock when we found out we were expecting no6 when charlie was only 6 months old and still waitin for his surgery with charlie our blood test results were 1 in 2,500 and with no6 they were 1 in 1750 so really not a huge difference.i did lots of research on history repeating itself and apparently is is very rare for a family to have 2 babies with DS last known case dated back to 1935 so quite a while.Although we weren't bothered so much with the DS the heart problems scared us more.Havin Jasmin has brought charlie along he constantly watches what she's doin and just lately has been copying her so i agree that havin a younger sibling does help, but is hard work with 2 babes under 2 but never mind lol You can easily disguise your grey hairs lol or buy a wig when youve pulled it all out lol
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Post by lizzymd² on Jan 8, 2007 21:41:33 GMT
Well i'm pregnant, Cameron is only 14 months old and I'm due in 6 weeks, we had read that another sibling will help with his development and because cameron is t21 then we thought why not, we always planned for more. Also this way cameron and baby dixon will start primary 1 together and when hes older he'll have a brother or sister close in age to him. We're going to have another one after this one, so he won't be surrounded by social workers and professionals later but family who love and care for him.
However lately i've been feeling that baby dixon will overtake cameron in development one day and i'll find that hard.
I would say defo to go for it.
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Post by lizzymd² on Jan 8, 2007 21:47:34 GMT
Can I add also the if Caleb and Grace are T21 then the chances of a ds son, daughter are the same again for your age etc.
I think i'm one of the older ones here at a young 33 and thats not stopping us.
I would say this pregnancy I've had more scans and tests (not amnio) only because my eyes have been opened to all the birth defects.
I sat in the out patients waiting room of maternity shortly after Cameron was born and I never felt so lucky.
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Post by Rilith on Jan 9, 2007 9:49:10 GMT
We are TTC again for number 4. While PG with Holly we found we were high risk for Trisomy 13. That scares us more than the Downs.
The only thing I could say is that as soon as you find out your are PG again you will have every test available to you to see if indeed it has occured again. If it happened to me again I would carry on with the PG, but if I found baby had T13 I would end the pregnancy. Its all down to personal choice. Would it matter so much if it did happen, or would you just be happy to have another child no matter what???
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Post by max on Jan 9, 2007 11:55:54 GMT
loads of great advice thanks so much! It sounds like Shirley and I are in really similar situations - first baby with DS but not too badly affected, aged 30 etc. Though Caleb doesn't need heart surgery thank God. yes its the real life changing problems that I am scared of - heart. digestion, (hubby was born with hirshprungs) leukimia scares me too... not so much the downs. I might have to tell hubby that we need to have another!!! He was looking forward to TTC - but we managed to get Caleb while I was still on the pill - so he is a right little miracle isn't he!
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Post by max on Jan 9, 2007 12:00:53 GMT
forgot to say - how did you find out you had a high risk of T13 - now that (or T18) would be scary.
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Post by Rilith on Jan 9, 2007 14:49:21 GMT
When we had the amnio and they checked Holly's Chromosomes they noticed then that she had a Robertsonian Translocation of C13. We were both asked to go back for blood tests, thats when they confirmed Carl was the carrier of it. His mum and dad had troubles concieving and had adopted Carls older brother and sister then he came along as a huge suprise . We have requested the boys to be bested when they are old enough.
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Post by pinkshell1110 on Jan 9, 2007 19:34:18 GMT
lizzy totally agree i find it really hard now that jasmin is walkin talkin and learnin every day, well i suppose i find it more frustrating but charlie does watch her and he does learn things like he copied her singin in a microphone not much to most people but for us its magic and a triumph ofr charlie but still wouldn't change him for the world we have both said time and time again that without the DS charlie wouldn't be charlie.
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Post by mashpotato on Jan 9, 2007 20:01:41 GMT
We had Saul's little brother Tai last August he is nearly 5 months. I wasn't to worried about him having Downs or any other problems, as i have a lot more understanding of the system, and facilities available to me now. When i was preg with Saul i had the nauchal fold and blood test, and chose not to tell my mum until they had come back fine, in case there was a problem and i would have aborted out of nievity (sp). I knew at 18 my mum expected me to go on to uni, so would be disapointed but Rob and i chose to have kids instead. All my tests did come back fine and it was sort of ironic that after this we were to find out he had Downs after his birth. But i have since been shown a whole new world where there is help available for our children, so i wasn't so scared the second time. I only chose to have the nauchal and bloods done again with Tai out of interest, i wanted to see how my results would change and i think it was 1:3000. It would have been hard with another disabled child but i think you just find a way of coping.
In saying that Tai is SO much harder to look after, Rob's the eldest of 7 and says his never known such an annoying baby. because he doesn't sleep and he cries most of the time, where as Saul was the opposite. There may be a time when Tai over takes Saul, but i'm hoping Tai talking will help Saul to talk more. Saul learns really well from other children, so having Tai around constantly will be good for him. He also wasn't to badly affected as a baby. his main probs at 3yrs old are speech, but thats down to poor service in our area, and getting him out of nappies. He goes to a mainstream nursery and i'm just applying to the school for sept. although in Feb he will start split placement with a special nursery to help improve his speech and short attention span.
You just have to make sure you know how you feel? we knew we wanted 2 children and the likelyhood of a repeat of downs was very uncommon, so we went for it. All my friends have healthy babies but the next time it could just as easily be one of them with a disabled child, they have just as much chance of being the 1 as any of us have
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Post by Jojo on Jan 9, 2007 20:44:15 GMT
I had Rhys 15 months after having Lisa, and I suppose I am much like Lizzy. I didn't go for the amnio (but that's just my choice) and had extra scans with him. In the long run we were'nt too scared of him having ds, just wanted to make sure he was healthy, which we were told from the scans, so we never really knew until we had him whether he would have ds or not.
He had a chance of 1:120 for having downs, but after having the nuchal fold measured (not the full nuchal and blood test, we would have had to travel too far for that, and as we were keeping him anyway didn't see the point) we were then given a 1:240 chance.
I have to say, up until now, (as he was a little on the early side) He is much like Lisa as a smaller baby, sleeps all the time, slow on picking things up, I mean the lil chap has only just learnt how to roll over at the grand age of nealy 6 monthsbless him lol!
He is a bit of a tubster though and I think he's finding his body a bit of a weight at the mo!
Anyway, going back to the point, the 'proffessionals' do say it is a good idea to have a close sibling for our special lo's, and I'm looking forward to the pair growing close together, though at the moment, Lisa is a real pest with him, always trying to grab him, and boy she's quick!!! The poor lil man will probably have a nervous breakdown before he's one lol!
Anyway, good luck if you're going to be giving it a go!xx
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Post by max on Jan 10, 2007 13:13:10 GMT
can anyone point me in the direction of some internet stuff on having another baby being good for development of a special LO?? I feel I need to convince the other half a bit more!!
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Post by Jojo on Jan 11, 2007 20:42:05 GMT
Lol...
Maybe you could have a word with your portage worker (if you have one) or someone else who works closely with you.
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Post by max on Jan 12, 2007 9:09:01 GMT
haven't got one yet - or anything actually. As Caleb has no health problems and seems to be developing normally so far we have been kind of put in the " sort things out if and when things need sorting" category I think. I think I will give my GP a call and see if he can make sure we do get attention at some point. I feel a bit torn by it all at the moment. I'm so proud of my little lad and he's doing so well, I want to keep things normal for as long as possible but I don't want to end up at the end of a long waiting list - but then I don't want to have oodles of appointments if he does't need them yet. Ho Hum??!!
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Post by heather1979 on Jan 24, 2007 9:32:08 GMT
Hi Girls,
As most of you know my husband and i have 2 children Joshua (7) and he has Williams Syndrome and Aaliyah (3) who has Downs Syndrome.In all i have been pregnant 7 times and apart from 2 of the pregnancies (joshua and aaliyah) the others have ended in miscarriage (inc a twin preg).
We were told after having Joshua that it would be highly unlikely to have another baby with abnormalities so we decided to try for another baby, after 2 1/2 years i finally became pregnant and miscarried,infact within 10 months i was pregnant 4 times,the forth pregnancy being Aaliyah, i was at a 58% of miscarring her because of the 3 previous and i had bleeding several times and part of the placenta started to come away at 12 weeks and most Downs pregnancies abort themseves but some how she held on.
We had 16 scans,inc 2 for her heart(they were checking for ws) and the nucal fold and bloods which all came normal,then within a few hours of her birth the doctor suspected something and 99% confirmed it next day, now i knew id want another one and have for a while but after all we've been through hubby doesnt want to tempt fate and have another baby incase its worse next time.
Our consulant said he would back us for genetic screening(sort of IVF) but the genetics lot at Nottingham Hosp have turned us down.
I really dont know what to do??? the hosp has said that there is under 1% for us to have another baby with Williams and 1% for another baby with Downs,adding to that all the miscarriages,the last one being march 06.
Like i said i dont know what to do sometimes the urge for another baby is soo strong and other times i think that i've got enough to cope with or that its just me being selfish as hubby is convinced that it would happen again and then theres Joshua and Aaliyah to think of (as people keep telling me!!)
Im only 27 and the thought of never having another baby is heartbreaking but its not just me i have to consider!!!
For me falling pregnant is easy, i only have to look at my other half,but there are so many what ifs going through my head, i could fall pregnant and miscarry,i could fall pregnant and have an amnio and loose a healthy baby due to the proceedure (sp) or i could have to terminate an unhealthy baby,which would be devastating!!!
Any of you girls have any words of wisdom???
Sorry for rambling but none of my friends understand what im feeling as they dont have special needs children(apart from shell!!).
Heather.x
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Post by shirley on Jan 24, 2007 10:41:44 GMT
Hi Heather,
Aww your poor thing, sounds like you have been through the mill to get the 2 little ones you have already. I can understand why you are concerned but also understand that you must want to have another little one.
If I was you I would keep pushing with the genitic screening, dont give up hope yet. The other option is to pay for it, my husband and I talked about that the other day after our appointment with genetics.Although we have no idea how much it would cost us, It is always a possibility and would mean that you wouldnt have to have an amnio and out the baby at risk.
I am sorry I cant be of more help but just wanted to reply to you and wish you all the best whatever you decide.
Love Shirley & Grace xx
Sorry I cant be of anymore help
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Post by heather1979 on Jan 24, 2007 11:41:24 GMT
Thanx Shirley.
We have thought about going private but we're just in the middle of an extension and have loaned the money till we can re-mortgage in 3 yers time then we have to pay it all back and have to cope with paying out extra for the mortgage and we wanted a new reliable car and we hoped to have a family holiday in 2008 to Disney World(we took the kids to euro disney last june for our honeymoon,which was our first ever hol and the kids loved it,there eyes light up when there see the adverts on the telly!!) so i dont see up having the money to pay for it for quite some years,think it would cost between £3000-£4000......might just come off the pill when house is finished and see what happens.
Heather.x p.s must admit that little Grace makes me sooo want another one,infact if it was a girl her middle name would be Grace after davids Gran,better than my Nannys...winnifred!!lol
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Post by shirley on Jan 24, 2007 11:58:37 GMT
thats sounds like as good an idea as any. I know how you feel about getting the house done. The whole way through my pregnancy last year we were getting building work done. We turned our 2 bedromm bungalow into a four bedroom house, NIGHTMARE!!!! We also added another bathroom an en suite and a new kitchen. It was only completely finished the week I was in hospital with Grace, Isnt it sooooooo stressful! But Worth it in the end, and now like yourself I want more babies to fill the rooms ha ha. As for the money end of it I am now of on maternity leave and we have a mega mortgage to pay but you know something... We have come through much worse and I wouldnt change a thing.
Its a pity you didnt live in NI you could come a borrow Grace the odd day if you wanted lol
Shirley & Grace xx
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Post by heather1979 on Jan 24, 2007 17:47:27 GMT
I know how you feel Shirley....stressfull !!! Were adding a bedroom,playroom and utility room,but the old bathroom +new extended bit = new bedroom if you know what i mean so the new bathroom has been relocated to front of house in part of front bedroom and because of having a combi boiler fitted and having a utility room added we are also having a new kitchen and the entrance to the playroom will be via the living room and our bedroom will be Aaliyahs new bedroom and the new bedroom will be ours.....confused!!! i am!!lol so what im trying to say is that weve a new kitchen,new bathroom,new utility room,new bedroom (+1 to totally redecorate,carpets etc) and going to have to redecorate living room due to having french doors put in.....so lots of painting and decorating which i love and lots of dust ,rubble ,building materials and rubbish eveywhere which i hate !!! Rang hosp about paying private for Genetic screening and they couldnt offer much advice,anyone know who to contact about this???
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Post by shirley on Jan 24, 2007 18:25:35 GMT
did you try google for genetic screening?
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Post by heather1979 on Jan 25, 2007 9:51:23 GMT
Hi Shirley, Good idea about the googling,tried it last night and theres either a hospital or clinic called Nurture and ive emailed them to see if they do the screening so waiting for an email back.
Love the pic of Grace on her ticker....sooooo cute!!!
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Post by shirley on Jan 25, 2007 10:57:26 GMT
Thats Great, let me know how you get on heather
Shirley xx
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Post by heather1979 on Jan 25, 2007 13:20:47 GMT
This was the reply that i got this morning
Morning Heather thank you for your e-mail. At NURTURE we do not do PGD. We have referred patients down to clinics in London. I don't know if CARE Nottingham do this screening, but it may be worth checking with them. Sorry I can't be more helpful kind regards
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Post by shirley on Jan 25, 2007 20:38:59 GMT
God they werent to helpful were they? Just go back to your consultant and tell him you want to appeal the decision that was made, you are entitled to it as much as the next person. TYPICAL Blooming Nhs, never wanna pay for anything,
You know I am actually angry typing this lol
Shirley xx
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Post by Rilith on Jan 26, 2007 17:44:48 GMT
I have no idea of what advice to offer. All I know is I personally am willing to take the risk. As you have read in my therapy we are high risk for T13. So that means lots of miscarriages, chance of stillbirth and losing baby very early on in its life.
I understand the fears and I understand where your DH is coming from too.
How I put it to Carl was, we have a 1:100 Chance of having another baby with downs, we were that 1, we now are the 99. He has come around so far now that he wouldn't flinch if it did happen again and neither would I. The 1st time is hard and for you the 2nd was too, lightning never stikes the same place 3 times... LOL
What ever you decide we will all be here in those tough times should you get PG and doesn't stick. We will support you when ever you need us to hunni
Good Luck and loads of Baby Dust XXXXX
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Post by adrienne on Feb 15, 2007 12:58:31 GMT
Just read what Heather is going through, hope things get sorted, i can just imagine what you are feeling.
Mark is 9 1/2 months and is our first child, we hope to try for another baby in the not too distance future, especially as i am now 31 and time is ticking by. One of our main concerns is what if we have another baby with ds. One of the reasons for us to have another baby would be that a younger brother or sister would be good for Mark and they would look out for him when we are not about.
If we ended up with another child with ds, we both would be heart broken but we would deal with it and love the baby as much as we do with Mark.
I don't think i would go for an anmio but would propably get blood test done if i got prg, but at the same time i don't know if i would want to know. we didn't know mark had ds until he was born. But i think i'll wait until mark is a little bit older before we think of another baby, defintely not ready to have one at the moment.
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Jo
New Member
William & Oliver
Posts: 46
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Post by Jo on Feb 18, 2007 16:40:12 GMT
Please don't worry, the chance of having another child with downs is minuscule, what you have been told is rubbish. Oliver is now 10 and doing just fine, very active and very fit in fact doing more than his parents as we spend all our time running about after the boys!! I also have a son of 7 who trust me is allot more hard work than Oliver, just because he is so confident. I would have 10 Oliver's to 1 William. I am involved with a very active group of many many families and there is a substantial amount of us that have gone on to having more children after and had no problems at all. Please don't worry yourself, enjoy your little bundle of fun, because trust me it doesn't happen for long and at 10 Oliver is not little any more and is now not far off being the same hight as his 12 year old brother.
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Post by max on Feb 19, 2007 10:48:22 GMT
I was told I had a 1% chance of having another baby with DS too - where does that stat come from? I don't think I know of any families with 2 children with DS unless its the inherited sort - and I on;y know 1 girl with that.
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Post by pinkshell1110 on Feb 19, 2007 12:19:12 GMT
hi there ladies i was also told the same i did some research on the internet and found that the last recorded case of a family with 2 children with DS was way back in the early 1900's and that was the inherited gene
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