Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 Every few months women here on are asked about their experiences trying to get pregnant, carrying babies, giving birth, having miscarriages, receiving genetic counseling, and how all these things are affected by having SMA Types 1, 2, or 3. Many women have told their stories here. I'd like to encourage people to search the archives for these stories. Also, I have created a folder in the Files section of this group titled " SMA Pregnancy Stories " . It would be great if some of you who have been through any of these experiences would put your stories into these files. In order to access this group's archives or files, you must be logged in with your ID. Let the moderators know if you have trouble with this. Alana Co-Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 Thanks Alana, I'm a lurker here and have type 2. I have a gorgeous 6 year old son - he takes up pretty much all of my energy so typing emails gets a low priority, hence the lurking. My pregnancy went well and I had no major complications related to SMA. I had to use BIPAP in 2nd and 3rd trimester as I don't breathe well enough for 2 whilst sleeping. I got to 36 weeks (usual pregnancy lasts 40) and then had a planned C-Section under general anaesthetic. I lost a lot of blood, had 3 blood transfusions and had a chest infection after surgery so my 1st week of being a mum was tough to say the least. I managed to breastfeed for 10 days, I wanted to do that for longer but decided that it was too much for my body. Moving on to formula milk was the best decision for both of us in the long run. Being a mum is without doubt the best experience in the world but it is an exhausting and demanding experience - pregnancy is only the start! My advice on pregnancy would be: 1. Think through what people are in your support network and (realistically) how much support you can ask of them. Talk to them before you get pregnant (if possible ) about the help you think you will need. 2. Find a good, supportive and understanding obstetrician (best if they have worked with SMA mums before) and access to best neo natal care (in case of premature baby) 3. Get a good understanding of any respiratory issues you might have in the 2nd and 3rd trimesters, I got great advice and support from my respiratory doctor. 4. Understand what medication you can take whilst you are pregnant, e.g. I stopped taking NSAIDs and had daily heparin injections throughout the pregnancy 5. Look after yourself and rest while you are pregnant - the opportunity to do so disappears (forever!) as soon as you are a mum! 6. ALWAYS have a back plan! From: [mailto: ] On Behalf Of -owner Sent: 07 February 2012 17:34 Subject: SMA Pregnancy Stories Every few months women here on are asked about their experiences trying to get pregnant, carrying babies, giving birth, having miscarriages, receiving genetic counseling, and how all these things are affected by having SMA Types 1, 2, or 3. Many women have told their stories here. I'd like to encourage people to search the archives for these stories. Also, I have created a folder in the Files section of this group titled " SMA Pregnancy Stories " . It would be great if some of you who have been through any of these experiences would put your stories into these files. In order to access this group's archives or files, you must be logged in with your ID. Let the moderators know if you have trouble with this. Alana Co-Moderator _____ No virus found in this message. Checked by AVG - www.avg.com Version: 2012.0.1913 / Virus Database: 2112/4793 - Release Date: 02/06/12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 Thanks for sharing. Will you be putting this in the files section? > > Thanks Alana, > > > > I'm a lurker here and have type 2. I have a gorgeous 6 year old son - he > takes up pretty much all of my energy so typing emails gets a low priority, > hence the lurking. > > > > My pregnancy went well and I had no major complications related to SMA. I > had to use BIPAP in 2nd and 3rd trimester as I don't breathe well enough for > 2 whilst sleeping. I got to 36 weeks (usual pregnancy lasts 40) and then > had a planned C-Section under general anaesthetic. I lost a lot of blood, > had 3 blood transfusions and had a chest infection after surgery so my 1st > week of being a mum was tough to say the least. I managed to breastfeed for > 10 days, I wanted to do that for longer but decided that it was too much for > my body. Moving on to formula milk was the best decision for both of us in > the long run. > > > > Being a mum is without doubt the best experience in the world but it is an > exhausting and demanding experience - pregnancy is only the start! > > > > My advice on pregnancy would be: > > > > 1. Think through what people are in your support network and (realistically) > how much support you can ask of them. Talk to them before you get pregnant > (if possible ) about the help you think you will need. > > 2. Find a good, supportive and understanding obstetrician (best if they > have worked with SMA mums before) and access to best neo natal care (in case > of premature baby) > > 3. Get a good understanding of any respiratory issues you might have in the > 2nd and 3rd trimesters, I got great advice and support from my respiratory > doctor. > > 4. Understand what medication you can take whilst you are pregnant, e.g. I > stopped taking NSAIDs and had daily heparin injections throughout the > pregnancy > > 5. Look after yourself and rest while you are pregnant - the opportunity to > do so disappears (forever!) as soon as you are a mum! > > 6. ALWAYS have a back plan! > > > > > > > > > > > > From: [mailto: ] On > Behalf Of -owner > Sent: 07 February 2012 17:34 > > Subject: SMA Pregnancy Stories > > > > > > Every few months women here on are asked about their experiences > trying to get pregnant, carrying babies, giving birth, having miscarriages, > receiving genetic counseling, and how all these things are affected by > having SMA Types 1, 2, or 3. > > Many women have told their stories here. I'd like to encourage people to > search the archives for these stories. > > Also, I have created a folder in the Files section of this group titled " SMA > Pregnancy Stories " . It would be great if some of you who have been through > any of these experiences would put your stories into these files. > > In order to access this group's archives or files, you must be logged in > with your ID. Let the moderators know if you have trouble with this. > > Alana > Co-Moderator > > > > _____ > > No virus found in this message. > Checked by AVG - www.avg.com > Version: 2012.0.1913 / Virus Database: 2112/4793 - Release Date: 02/06/12 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 Good idea! x From: [mailto: ] On Behalf Of althegrrl Sent: 07 February 2012 19:46 Subject: Re: SMA Pregnancy Stories Thanks for sharing. Will you be putting this in the files section? > > Thanks Alana, > > > > I'm a lurker here and have type 2. I have a gorgeous 6 year old son - he > takes up pretty much all of my energy so typing emails gets a low priority, > hence the lurking. > > > > My pregnancy went well and I had no major complications related to SMA. I > had to use BIPAP in 2nd and 3rd trimester as I don't breathe well enough for > 2 whilst sleeping. I got to 36 weeks (usual pregnancy lasts 40) and then > had a planned C-Section under general anaesthetic. I lost a lot of blood, > had 3 blood transfusions and had a chest infection after surgery so my 1st > week of being a mum was tough to say the least. I managed to breastfeed for > 10 days, I wanted to do that for longer but decided that it was too much for > my body. Moving on to formula milk was the best decision for both of us in > the long run. > > > > Being a mum is without doubt the best experience in the world but it is an > exhausting and demanding experience - pregnancy is only the start! > > > > My advice on pregnancy would be: > > > > 1. Think through what people are in your support network and (realistically) > how much support you can ask of them. Talk to them before you get pregnant > (if possible ) about the help you think you will need. > > 2. Find a good, supportive and understanding obstetrician (best if they > have worked with SMA mums before) and access to best neo natal care (in case > of premature baby) > > 3. Get a good understanding of any respiratory issues you might have in the > 2nd and 3rd trimesters, I got great advice and support from my respiratory > doctor. > > 4. Understand what medication you can take whilst you are pregnant, e.g. I > stopped taking NSAIDs and had daily heparin injections throughout the > pregnancy > > 5. Look after yourself and rest while you are pregnant - the opportunity to > do so disappears (forever!) as soon as you are a mum! > > 6. ALWAYS have a back plan! > > > > > > > > > > > > From: <mailto:%40> [mailto: <mailto:%40> ] On > Behalf Of -owner <mailto:-owner%40> > Sent: 07 February 2012 17:34 > <mailto:%40> > Subject: SMA Pregnancy Stories > > > > > > Every few months women here on are asked about their experiences > trying to get pregnant, carrying babies, giving birth, having miscarriages, > receiving genetic counseling, and how all these things are affected by > having SMA Types 1, 2, or 3. > > Many women have told their stories here. I'd like to encourage people to > search the archives for these stories. > > Also, I have created a folder in the Files section of this group titled " SMA > Pregnancy Stories " . It would be great if some of you who have been through > any of these experiences would put your stories into these files. > > In order to access this group's archives or files, you must be logged in > with your ID. Let the moderators know if you have trouble with this. > > Alana > Co-Moderator > > > > _____ > > No virus found in this message. > Checked by AVG - www.avg.com > Version: 2012.0.1913 / Virus Database: 2112/4793 - Release Date: 02/06/12 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 This is my personal favorite SMA pregnancy story: http://www.parade.com/health/2010/09/05-miracle-mom-stacy-wiparina.html > > > > Thanks Alana, > > > > > > > > I'm a lurker here and have type 2. I have a gorgeous 6 year old son - he > > takes up pretty much all of my energy so typing emails gets a low > priority, > > hence the lurking. > > > > > > > > My pregnancy went well and I had no major complications related to SMA. I > > had to use BIPAP in 2nd and 3rd trimester as I don't breathe well enough > for > > 2 whilst sleeping. I got to 36 weeks (usual pregnancy lasts 40) and then > > had a planned C-Section under general anaesthetic. I lost a lot of blood, > > had 3 blood transfusions and had a chest infection after surgery so my 1st > > week of being a mum was tough to say the least. I managed to breastfeed > for > > 10 days, I wanted to do that for longer but decided that it was too much > for > > my body. Moving on to formula milk was the best decision for both of us in > > the long run. > > > > > > > > Being a mum is without doubt the best experience in the world but it is an > > exhausting and demanding experience - pregnancy is only the start! > > > > > > > > My advice on pregnancy would be: > > > > > > > > 1. Think through what people are in your support network and > (realistically) > > how much support you can ask of them. Talk to them before you get pregnant > > (if possible ) about the help you think you will need. > > > > 2. Find a good, supportive and understanding obstetrician (best if they > > have worked with SMA mums before) and access to best neo natal care (in > case > > of premature baby) > > > > 3. Get a good understanding of any respiratory issues you might have in > the > > 2nd and 3rd trimesters, I got great advice and support from my respiratory > > doctor. > > > > 4. Understand what medication you can take whilst you are pregnant, e.g. I > > stopped taking NSAIDs and had daily heparin injections throughout the > > pregnancy > > > > 5. Look after yourself and rest while you are pregnant - the opportunity > to > > do so disappears (forever!) as soon as you are a mum! > > > > 6. ALWAYS have a back plan! > > > > > > > > > > > > > > > > > > > > > > > > From: <mailto:%40> > [mailto: <mailto:%40> ] > On > > Behalf Of -owner > <mailto:-owner%40> > > Sent: 07 February 2012 17:34 > > <mailto:%40> > > Subject: SMA Pregnancy Stories > > > > > > > > > > > > Every few months women here on are asked about their > experiences > > trying to get pregnant, carrying babies, giving birth, having > miscarriages, > > receiving genetic counseling, and how all these things are affected by > > having SMA Types 1, 2, or 3. > > > > Many women have told their stories here. I'd like to encourage people to > > search the archives for these stories. > > > > Also, I have created a folder in the Files section of this group titled > " SMA > > Pregnancy Stories " . It would be great if some of you who have been through > > any of these experiences would put your stories into these files. > > > > In order to access this group's archives or files, you must be logged in > > with your ID. Let the moderators know if you have trouble with this. > > > > Alana > > Co-Moderator > > > > > > > > _____ > > > > No virus found in this message. > > Checked by AVG - www.avg.com > > Version: 2012.0.1913 / Virus Database: 2112/4793 - Release Date: 02/06/12 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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