TTC when #1 is a special needs baby.
Printed From: OHbaby!
Category: Planning Pregnancy (trying for baby)
Forum Name: Planning Pregnancy (trying for baby)
Forum Description: Trying to get pregnant? Going through fertility treatment? Just planning your first or second child? There are many people out there in the same boat to help and listen and share with
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=38822
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Topic: TTC when #1 is a special needs baby.
Posted By: Georgiegirl
Subject: TTC when #1 is a special needs baby.
Date Posted: 15 April 2011 at 7:15pm
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I'm not sure if there are many in the same boat as me... but if you are I'd love some company.
I have a beautiful little girl nearly 15 mths who has a rare chromosome syndrome called Pallister Killians and she is severely handicapped. DH and I have decided to try for #2 and understandably we are petrified. Luckily, her condition is totally random, so there is no chance of baby number 2 having the same problems. But that doesn't stop me worrying. I have started this forum... in the hopes of giving and receiving understanding support. ------------- http://www.fertilityfriend.com/home/279456"> 
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Replies:
Posted By: Inkedpixie
Date Posted: 15 April 2011 at 7:42pm
Hi didn't want to read and run! Sorry I don't have any advice to offer, but good luck to you and your family in ttc #2!
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Posted By: Georgiegirl
Date Posted: 16 April 2011 at 7:22am
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Thanks Inkedpixie... If I met only 1 other Mum in a similar situation is will be well worth it for me.
------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: Hun
Date Posted: 16 April 2011 at 6:59pm
| Hey Georgiegirl, not in the same position as you but wanted to lend some support nonetheless! I can relate to your fear though - one of my sisters kids has aspergers syndrome, and my brothers wife just had their first child and for the first week the doctors were very worried that he might have e genetic abnormality as well (it was a very complicated birth, but thankfully he is totally fine now). So of course one of the first things that comes into your head is what if there's something in our family and my kids will also suffer from something. Pretty irrational really but you can't help but worry. Anyway, good luck and try not to stress (although its pretty impossible not to i know!) |
Posted By: Georgiegirl
Date Posted: 16 April 2011 at 8:05pm
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Thanks Hun, Its so nice of you to message...I'm so glad your brothers baby is ok... and I hope that the aspergers is not too severe.
Life with a special needs child can be so hard... but my gorgeous girl has opened our lives to a world of caring beautiful people.
I can not wait to have another little bundle, I love my girl but I yearn for a baby that will look at me and talk to me and do all those things we dearly hope Ava may do one day...??? ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: High9
Date Posted: 16 April 2011 at 9:33pm
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I'm not in the same situation but was at the pool today and there was a group of people there having a birthday part for young kids and one of the families had a severely handicapped boy (maybe 5 or 6yo) and a maybe 2yo girl who didn't appear to be handicapped. It definitely got me thinking about #2 etc. All the best with your TTC journey. I can't imagine what you are going through but do imagine it must be scary so I wish you all the best with everything :).
My cousin is currently having #3 and after 2 healthy babies #3 appears to have some abnormalities of the heart so they are hoping for the best. ------------- http://lilypie.com"> 
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Posted By: Georgiegirl
Date Posted: 16 April 2011 at 10:24pm
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High9 Thanks for your support.
Going out in public is hard now that our girl is obviously special needs, I really admire families that are out there doing it! I guess I will get braver as time goes by. I'm sorry to hear about your Cousin. We worry for our babies but I think we never really believe its possible that it could happen to us. I wish your cousin all the best for a healthy happy bub. ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: Lexidore
Date Posted: 17 April 2011 at 9:14am
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Georgiegirl, I also didn't want to read and run, good for you going for number 2 hun! Good luck and hope its a quick painless journey for you! ------------- 
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Posted By: Roses are Red
Date Posted: 17 April 2011 at 7:59pm
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I dont have a special needs child but a close friends first child has spina bifida and she was worried when she was pregnant with #2 but he has just had his 1st birthday and he is fine. Its understandable that you are worried...
All the best for TTC and a healthy bub ------------- 
 Angel March 2011
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Posted By: Georgiegirl
Date Posted: 17 April 2011 at 8:36pm
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Thanks Tauris...
Its nice of everyone to respond to my forum... hopefully it means it will stay open long enough to find some other Special needs Mums. I'm really hanging out now only a couple of days till testing time. I don't think this is my month but I still hope.  ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: tuesdaysbaby
Date Posted: 17 April 2011 at 8:44pm
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Hi Georgiegirl,
I didn't want to read and run either! I'm TTC'ing our first now so no experience with what you're going through but just wanted to share a family story of a baby born with special needs (rather severe)and the couple then went on to have two more with no disabilities. You're admirable and I wish you a happy journey TTC #2
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Posted By: AandCsmum
Date Posted: 17 April 2011 at 10:03pm
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Hi Erin, A lady at our school has one child with SN but two other perfectly healthy kids :) I hope you find some support on here ------------- Kel http://lilypie.com"> 
A = 01.02.04 & C = 16.01.09 & G = 30.03.12 |
Posted By: Limochick
Date Posted: 18 April 2011 at 3:31pm
I'm not in the same situation but my oldest has a heart condition (he had open heart surgery 2yrs ago now) and he does need special attention, he also has adhd and also autistic tendencies!! I know what it's like to have a child with needs they deffinetly open your eyes and appreciate everything that you have!! Good luck with your ttc journey and it sounds like your daughter has a very special mum  -------------  
 
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Posted By: crafty1
Date Posted: 18 April 2011 at 6:45pm
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Isn't there a section for families with kids with special needs? There is on the everybody.co.nz forum
A friend's second child has downs syndrome and she started ttc when he was 8 mo so the 2 boys are quite close in age. They are great mates. ------------- http://lilypie.com">  
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Posted By: crafty1
Date Posted: 18 April 2011 at 6:46pm
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Isn't there a section for families with kids with special needs? There is on the everybody.co.nz forum
A friend's second child has downs syndrome and she started ttc when he was 8 mo so the 2 boys are quite close in age. They are great mates. ------------- http://lilypie.com">
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Posted By: Georgiegirl
Date Posted: 18 April 2011 at 7:08pm
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There is a section here at oh Baby, but unfortunately posts are few and far between... so I thought I'd step outside the box.
Thanks for the tip on a different forum. ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: Georgiegirl
Date Posted: 18 April 2011 at 7:08pm
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There is a section here at oh Baby, but unfortunately posts are few and far between... so I thought I'd step outside the box.
Thanks for the tip on a different forum. ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: CrazyCass
Date Posted: 18 April 2011 at 7:32pm
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Didn't want to read & run, my Aunty has 3 kids, the middle one has Autism quite bad. When she fell preg with No.3 they just did the tests bang on 12w that they'd only do if the NT scan was abnormal.... just for peace of mind - their 3rd is adorable & all the kids are great mates which is great.
Observing the family, the oldest (boy) is the kindest & most generous guy I will ever know, its amazing how it does affect the whole family - but in good ways
All the best TTC No.2 There is plenty of support for you no matter where you look! xx ------------- http://lilypie.com"> 
http://lilypie.com"> 
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Posted By: Raspberryjam
Date Posted: 18 April 2011 at 10:19pm
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My first has a serious heart condition, and my number 2 is perfect - I totally understand your fears - we felt liek we were playing russian roulette even though its congential defect - with a 1 in 650000 chance of having a child born with it - and after 3 scans and a fetal echo to boot I dont think I was relaxed until that precious babe was handed to me. And I still got a heart check when she was 2 or so weeks old!
I guess the only advice is try not think about it! and when you do, just send that bub (once you have em in there) positive happy healthy vibes and take care of you too. Guess its a bonus having one to keep you busy already, I just smile when I looked at number one, I am so blessed to have her, but I was so glad to not have to do it again Good luck hun, I have my fingers crossed for you x ------------- http://lilypie.com] 
http://lilypie.com] 
http://lilypie.com] 
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Posted By: Georgiegirl
Date Posted: 19 April 2011 at 9:55am
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So sad today.... AF arrived.
I'm heartbroken again. When you have a little one you dream of all the things you are going to do with your baby as they grow... for me last week it was picking out a wheelchair. I just want a baby that is going to learn to catch a ball and do all those things that my little girl can't. I feel as though having another baby that is normal will at least bring us back in to normal society a little. It hurts so much every month AF arrives. Even on my saddest days I get a little bit stronger. ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: Raspberryjam
Date Posted: 19 April 2011 at 11:14pm
 hang in there hun, Im sure there is something special in store for you ------------- http://lilypie.com]
http://lilypie.com]
http://lilypie.com]
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Posted By: crafty1
Date Posted: 20 April 2011 at 10:21am
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Oh georgiegirl - that sucks that AF came again.
FX for your turn soon. ------------- http://lilypie.com">
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Posted By: Georgiegirl
Date Posted: 20 April 2011 at 10:29am
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I was really nervous starting this thread... As I am aware that my situation is most pregnant women's worst fear... and I didn't think anyone would want to think about it.
I'm so sorry if I have caused fear or pain for any of you... I was really just hoping to meet someone in my situation.. But I have been really touched by all the kindness from you all. I guess in this life we all have fears and we all have pain, whether that is from a special child, a normal one, a husband that didn't stay, a sickness affecting someone we love, or from the hurt of not being able to conceive . Sending out love, understanding and friendship to all out there who are sad today for any reason. ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: crafty1
Date Posted: 20 April 2011 at 6:14pm
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GG - i don't think having a disabled child is the worst fear, having no baby/baby dying is my worst fear. Disability is just one end of the spectrum of ability and health. It's all normal in my mind and we should see people with disabilities more in daily life so that it is more normalised.
Like you said there are lots of sadnesses in life and having a child of any ability can be both joyful and difficult. ------------- http://lilypie.com">
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Posted By: Georgiegirl
Date Posted: 20 April 2011 at 6:38pm
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Very True Crafty1, My little girl is at the very far end of that spectrum unfortunately... :-( Yesterday the Paediatrician referred to her a "profoundly intellectually handicapped". It was the hardest thing I've heard in a long time...
------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: LJsmum
Date Posted: 23 April 2011 at 7:48pm
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I am so sorry to hear that georgie girl. I hope you find support and friendship on here. i have heard there is a group for parents/ children with special needs that meets in auckland not sure of the details.That may be helpful, maybe google it?
My friend has a severly disabled child he has just turned 5yrs and started at a special school. they are also trying for number 2, he has a genetic / chromosome adnormalilty. It is hard and my heart goes out to you. -------------  
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Posted By: Georgiegirl
Date Posted: 27 April 2011 at 6:55pm
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Thanks for your message LJsmum... FX crossed for your friend.. its a scary scary time. Sending a truck load of baby dust her way.
------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: lil_l
Date Posted: 28 April 2011 at 8:49pm
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Hi GG,
sorry to hear about AF! I just thought I'd post, my daughter was born with a genetic condition called Holt Oram Syndrome. Although not too serious, it usually affects and deforms the upper limbs and the heart. We are still in diagnosis stage so are quite unsure of what it has done (besides the obvious arm/hand deformities) and what other conditions she has that go hand in hand with Holt Oram. We're not currently TTC, but please feel free to PM me
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Posted By: 5th...and final??
Date Posted: 02 May 2011 at 4:35pm
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didn't want to read and run, and hoping to keep this front page for you, so that you can find some friendship and support.
take care of yourself ------------- 
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Posted By: Georgiegirl
Date Posted: 03 May 2011 at 9:06am
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Thanks 3rdtimelucky... I appreciate your message.
------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: KcP
Date Posted: 03 May 2011 at 9:19am
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HI GG, i was drawn to your thread .. My partners son has severe pervasive developmental disorder (Autism). While he is not my biological son, I do care for him every day and DP and i started TTC back in december.
I have type one diabetes from a condition i developed as a child, and one sister has cystic fibrosis and another has downs syndrome and severe cerebral palsey. While Im not in your place with a severely disabled child my heart goes out to you in your search for a 'normal' child. My partner feared having another child with Autism and I guess because im slightly removed (as in not a genetic link ) i dont have that fear. I just fear not being able to have a child of my own  But also I worry about being able to care for both of children.. Iz needs alot of attention and care but a small baby will need more. At the same time ive heard of alot of stories where siblings have helped the development of autistic children.
Anyway, im rambling.. ------------- Small family of three TTC #1 4 years http://alterna-tickers.com"> 
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Posted By: NovMum
Date Posted: 03 May 2011 at 9:24am
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Hi Georgiegirl, my first baby had a stroke (probably before she was born).. It was the worst time of my life as we struggled to get dr's to even believe us that something was wrong, then we were initially told that she probably wouldn't walk. It was a tough few years, she has had many small operations and loads of physio etc, so I have some small idea of how you feel... We were lucky and she is now doing great...
Anyway I was terrified while I was pregnant with number 2, wondering if somehow something I had done had caused the stroke, but it all turned out fine and we have a lovely 6 month old. I really wish you all the best ------------- http://lilypie.com"> 
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