Pregnancy after having a special needs child

[Emmea12uk]

I wish you the best of luck with that. It is fascinating what stem cell technology there is. I really hope your new bubba doesn't have any problems.

 

[Caezzybe]

Just thought I'd update and let you know that we got the amnio results back a week ago and Miss Bumpity does have the same very rare chromosome abnormality that Findlay has. We are absolutely devastated

Oh Lottie, I am so sorry to hear your news Huge hugs to you, I will be thinking of you xxx

 

[DanielleM]

I am not pregnant at the minute, had my son in January but when I was pregnant I was not worried at all, it was like I shut down that part of my brain. But no he is born I am like a paranoid freak, I think all sorts are wrong with him, my doctor must think I am going round the twist!! Jacob is now 3 months and seems to be perfect with his muscle tone and head control, but it still doesn't help with all the thoughts going through my head if he ends up with a disability, I wonder how I will cope with 2 disabled children? Hope all of you have a healthy and happy pregnancies with healthy LO!!! xx

 

[Caezzybe]

I have an update. I had my 12 week scan last week and the nuchal fold was 1.4mm. Today I got my full results back (including from the blood tests) and my risk is 1 in 760, not bad for a 42 year old! I know Logan was a false negative for Down's Syndrome with 1 in 560, but I reckon the chances of lightning striking twice with 2 false negatives must be minimal? The baby's head looked a completely different shape than Logan's at 12 weeks, much rounder at the back (Logan has brachycephaly as do most babies with DS) and has a more pronounced facial profile. Baby number 2 also clearly has a nasal bone.

The hospital midwife asked me twice if I want invasive testing and I said no both times, she looked at me like I had two heads for saying no but there is no way I would terminate if the outcome was positive for DS anyway. The hospital I am under are taking part in the pilot study for the new non-invasive testing, but won't test my blood as I'm not having amnio or CVS and they apparently need something to compare the results against.

 

[LunaBean]

Anymore pics/vids of the wee man? How cheeky of that nurse, kinda expecting you to have the test done! I dont want any done, cus I wudnt terminate either

 

[Lottie86]

My update is that Miss Bumpity will be arriving via planned csection next Thursday morning at 34 weeks. She is symmetrically absolutely tiny for her gestation and yesterday's growth scan (am on weekly doppler scans, fortnightly growth scans and ctgs every other day to keep a very close eye on her) showed she's currently measuring around 5 and a half weeks behind and her fluid level is really low too at 2.8. Just need to keep our fingers crossed there is an intensive care bed free for her as she's not going to be like a 'standard' 34 weeker due to the trisomy so she'll prob spend a fair few weeks in hospital.
I nearly ended up staying in hospital last night and depending on how things go today I may end up back in again (they're querying if I have a small abruption starting) so there's a chance she may be delivered before next week.

 

[Emmea12uk]

you poor thing. I really hope she holds on the week and that you are ok.

 

[dizzybella]

my gorgeous nearly 2 yr old has Downs and im due my next one in 4wks, 6 days (not that im counting...;-) We didnt get this wee one tested altho i hav battled back and forth about a 3d scan- but i decided that it wudnt make a diff anyway so i'l just wait and see. Shes measuring a bit small which has worried me but i just hav to remember that not everythin is associated wit DS. I admit i'l b upset if she has ds but only cus i worry about her health and how my hubby will cope. but no matter wat she'll be loved and we'll do our best. think my hormones are just gettin to me and makin me fret cus i know logically that as soon as shes here i'll be a happy mummy no matter wat.

 

[Lottie86]

I ended up back in hospital yesterday as the contractions weren't stopping and I'll be here until my csection next week so they can keep me dosed up on strong painkillers and give me a sleeping tablet each night so I can try and get a few hours dozing in amongst the pain. My ctg looks like a mountain range!

 

[Newdreemz]

I ended up back in hospital yesterday as the contractions weren't stopping and I'll be here until my csection next week so they can keep me dosed up on strong painkillers and give me a sleeping tablet each night so I can try and get a few hours dozing in amongst the pain. My ctg looks like a mountain range!

Been awhile since I checked this thread. I hope your doing okay!

 

[Peanut78]

Lottie, I hope everything goes well and bumpity is delivered safely

Dizzybella, good luck with your baba's arrival in 4 weeks time

We received our son's test results for regeressive, degenerative "demyelinating" conditions last week - all negative

At this stage we are hoping his dysmyelination comes down to a delayed structural growth rather than a permanent absence. Only time will tell, we should know more by 3-4 years age. In the meantime he is making lots of progress and picking up new skills every week

As this new baby's birth draws near I have found myself worrying more about whether he may have the same issues, but it will be at least 8 months before we would be able to begin to assess that, so I need to find a way of letting it go somehow. I guess the advantage of having been through this once is knowing what the warning signs would look like. I just don't want to find myself assessing the new child's every move either...

 

[Floridasun]

I ttc with second child at the moment. My son has Aspergers, so i'm not so worried about this child having the same. I'm more worried about how my son will cope with a new baby. He doesn't like babies now, there to unpredicatable for him. I'm hoping a brother or sister for him would be different. It is a worry though

 

[Newdreemz]

I ttc with second child at the moment. My son has Aspergers, so i'm not so worried about this child having the same. I'm more worried about how my son will cope with a new baby. He doesn't like babies now, there to unpredicatable for him. I'm hoping a brother or sister for him would be different. It is a worry though

I understand. My 3 year old son has aspergers, and he has a big sister who he looks up too. So it was the other way around. It was hard for her to get used to HIM. She was so jealous! but now she enjoys him so much. But now I'm expecting a baby next week and my last concern is if this baby will be autistic. I'm more worried about my son being able to deal with someone stealing his spotlight! At the same time I do think they will get used to it! New babies are always hard for the other children to accept. I think as long as you give him his individualized attention, and involve him in helping like letting him hand you a diaper to help, he'll get used to it. but no doubt the first month or two is going to be the WORST!

 

[Caezzybe]

Lottie, wishing you all the best and hoping that Miss Bumpity has a safe delivery. Huge hugs to you xxx

Dizzybella, here's keeping my fingers crossed that everything goes well, by the same stage in my pregnancy I'll probably be nervous too xx were you offered any extra scans? I'm having a fetal echocardiogram done as Logan has an ASD.

 

[Mummy2Boo]

What a mixed thread..... all round.

My son has a very rare genetic condition, so rare his geneticist hasn't ever seen it before. We're currently going through tests to see if they can identify the mutation to enable us to have IVF with PGD, otherwise we have a 1 in 4 chance of passing the condition again. On top of his condition, he also has severe HMS and an IgA deficiency to throw into the mix, both of which could also be passed along but those are 'easy' to cope with by comparison. It's also been suggested that he may have an ASD but again, we can deal with that.

If we can't have IVF PGD then we'll most likelt decline any invasive screening. We did the same with our son - I have the triple bloods and a NT scan. I had chicken pox early on and if passed to a developing baby can cause blindness and deafness so we continued knowing we were high risk but we could cope.

 

[dizzybella]

Lottie, wishing you all the best and hoping that Miss Bumpity has a safe delivery. Huge hugs to you xxx

Dizzybella, here's keeping my fingers crossed that everything goes well, by the same stage in my pregnancy I'll probably be nervous too xx were you offered any extra scans? I'm having a fetal echocardiogram done as Logan has an ASD.

i've been scanned every 2-4 weeks so theyre keepin a close eye on her thankfully i love the name Logan!! Thats one i hadnt come across wen we thot this wee one was a boy...have to bear that one in mind for the next one lol!! At which my hubby is near havin a fit- apparently the last 8months have been hell for him and i'm not allowed anymore after Callie arrives We'll see who wins that argument... Hope ur lookin after urself - i think its easy to fret and worry about our bumps and forget to look after ourselves!! Wee treats do us good and keep our heads in a positive place xx

 

[Nathyrra]

Hey guys,

Just found out a few days ago I'm pregnant. I'm very scared. Our son was diagnosed with Down Syndrome at birth and it was an absolutely awful time for us. Not quite sure how the pregnancy happened, as I have pcos, endometriosis, one ovary, hypothyroidism and a progesterone defiency! My son was conceived with assisted medical help. Truly a miracle. I battled alot of demons with my son with blaming myself and my fertility problems on his condition, so I'm currently just extremely nervous how this pregnancy pans out.

We have talked about it before, and have decided we will be doing an amnio when the time comes. As my son had absolutely no markers during pregnancy I'm much too nervous to carry to term with the not knowing again.

 

[Caezzybe]

I was just wondering how everybody's pregnancies are going, has anyone had their baby yet?

I'm 20 weeks tomorrow and things appear to be going well apart from gestational diabetes. I have my 20 week scan next week and a precautionary fetal echocardiogram at Guy's Hospital the week after. As Logan had undetected Down's Syndrome and a small ASD, it was felt that the echocardiogram was justified to make sure things are OK with baby number 2

I don't think I'll be entirely convinced that the baby I am carrying is OK until he or she is born and I can see for myself that he/she is unaffected by any issues.

 

[Lottie86]

I had my baby 4.5wks ago via emergency csection due to fetal distress. Iona is doing much much better than she was (she was on a ventilator for most of her first week, had a pneumothorax and we were told the morning after she was born that the next few days would be critical but it turns out she's a real fighter like Findlay). She's still in hospital and absolutely no idea how much longer we'll be in for but It's likely to be quite some time.

Her growth probs are ongoing and to get her to put on weight she's on preterm fortifier to add extra protein, fat, vitamins etc to her milk and also Duocal to add even more fat and calories to her feed. Even with all that she's not exactly piling it on although at least she's gaining something.

SALT and Physio are already involved with her. SALT are reviewing her daily during the week but have said at the mo she can only be tube fed as she's at risk of aspirating if they tried her with a breast or bottle but hopefully it won't be too long before we can try her breastfeeding or with a bottle.

Hope everyone is feeling well xx

 

[9babiesgone]

My first is special needs, and when I got pregnant with my 2nd I was so scared, I would have another one, bc I didnt want my kids to struggle, I Love my first so so much, and wouldnt change her for the world, but it is hard on her, to be different than other kids. so it was a bit of relief when My 2nd wasnt special needs. It is scary sometimes, but you know I love my kids equally. and the thing is just bc one of your kids has special needs, doesnt mean the 2nd or 3rd will too!! Though we lost an baby in january to edwards syndrome. : ( but anyways, that it can happen and it cant happen. so I give you all props for doing this, and hope to be joining your ranks again soon!!! we are ttc my 3rd for about 2 years now.