 Posted 27/07/2011 11:50:53
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| Hi All, I was diagbosed with osteogenesis imperfecta type 1 in Aug 2009 after a pelvic fracture in feb 09 (I have previously had fractured wrist, arm and toes). I tried oral alendronic acid in Aug 2009 but it made me so ill with digestive side effects that I am unable to take it again. I have been on calcichew D3 forte ever since as have been trying for a family. I am told that I will need to have the annual iv infusions of zoledronate (sp?) in the future, which terrifies me as the side effects sound horrific with that too. Anyway, I am now 5 mths pregnant and my obstetric consultant is suggesting I try for normal delivery but with no instrumental intevrnetions eg. no forceps etc, bu that I will need a c-section if I or baby are in distress. I think it would be better to just have a c-section straight off, so there's no risk (my baby has a 50% chance of having osteogenesis imperfecta too). He is liaising with my orthopaedic consultant at Oswestry and also paediatric consultants etc and i'm hoping he'll have made a decision when I see him at my 28 week appt in Sep. I am just wondering if anyone on here has osteoporosis (I am deemed significantly ostroporotic - I am 31) and given birth naturally following a previous pelvic fracture? I am really worried about it. Thanks, Amy
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Posted 28/07/2011 15:38:35
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Have you tried speaking to someone on our Osteoporosis Helpline 0845 450 0230? It's run by very friendly nurses who'd be happy to talk to you about your osteoporosis and you pregnancy.
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Dylan Hughes
Website Editor
National Osteoporosis Society
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Posted 29/07/2011 12:44:02
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Hi,
Our situations sound really similar. My daughter is five months old and I went through exactly what you are going though at the moment.
I am 32 and also have OI type 1 or 4. I was diagnosed in my twenties but have had fractures all my life (about 20 so far). I also suffered a nasty pelvis fracture in '08 and have severe osteoporosis. I take calcium and vit D and took bisphosphonates for 6 months one year before I tried to conceive and my bone density did rise by 10%. My doctor said that I can't have any more treatment until after I have had my children.
When I was pregnant my Obstetrician advised from the off that I should have a planned c-section and she wouldn't consider a natural birth. Although she made it clear that it was 'my decision' she heavily pushed me towards the section. As you'll understand my daughter also has a 50% chance of inheriting OI and her belief was that not only was it safer for me, taking in to account my OI and previous pelvic fractures, but also for the baby. I must tell you that this was only her opinion. I have since seen a paediatrician with my daughter who said that a vaginal birth would have been safer for the baby!! I really think it depends who you ask and the truth is they don't really know for sure. Also, there is such variation in patients with OI that I think everyone is different. I know that our children have a 50% chance of having OI but they could have different symptoms or suffer more or less than us.
I think that you should do what you feel is the best for you. I have to tell you that at first I was disappointed that I wouldn't have a natural labour but the planned c-section really was brilliant. It was very calm and I felt safe and looked after. Also, I wasn't scared about myself at all whereas I think I would have been very afraid of breaking a bone in childbirth. I have had lots of initially undiagnosed fractures in my life and was worried I would sustain a broken bone but know one would believe me! My daughter was born quickly and calmly and even though I have been told since that it maybe wasn't the safest I will definitely choose to have this again.
There are risks with a c-section and you have to weigh these up. I really believe that doctors can only do their best with us as there is such a real lack of knowledge about OI. Every doctor has had different experiences of patients with OI and that affects their opinion. We don't fit into a neat tick box of symptoms and so I think you should do what you think is best.
Please let me know what happens as I am really interested to hear from another woman in a similar situation to myself. I have read accounts from other women on here but not with OI and I think our situation is quite unique. My daughter is so beautiful and being a mother is so amazing, whatever type of birth you have it will not matter in the long run.
Lastly, have you been given any advice re breastfeeding? I was given contrasting advice by three different doctors and decided to do it. I have since suffered vertebral fractures and have had to stop in the last couple of weeks. I do not regret my decision but am unsure how big an impact on my bone density it has had. I am interested in what you have been advised?
Look forward to hearing from you,
K.
33 yr old new mum
with osteogenesis imperfecta and osteoporosis.
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Posted 03/08/2011 18:18:09
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| Hi Amy, I'd be really interested to see how you get on. I was diagnosed with osteoporosis at 32 and was taking fosamax and calcium & vit d for 6 years but stopped as we were trying to get pregnant. I am pregnant now and am finding it hard to get any information about risks during childbirth. I had a nasty coccyx break and am concerned about giving birth with this and any risk of pelvic injury. I'm in Telford but not from here so my osteo care to date has been in London but I'm desperate to find out if there are any guidelines/information. Many thanks, Rosta
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