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Pregnant after a medial TOP due to rare form of SB

(6 Posts)
Angelmummytochloe Wed 03-Oct-12 21:42:46

Hi I am just after advice really. I'm 6 weeks pregnant and scared the same will happen to this pregnancy like the first, at 3 months I went for a scan and everything was normal or so I thought, then at 5 months they see my girl had a rare and serve form of spina bifida and would not survive out side the womb sad I've been on 5mg folic acid for 10months to try and prevent this happening again, I got told I would have a early scan but today I rung the midwife and she told me my scan is 15th November, I fill this is to long to wait, my dad passed away a month after my girl I'm just so stressed and worried I need some advice, sorry for the long post any advice would be great thank you in advance x

Havingkittens Thu 04-Oct-12 10:31:20

Hi Angelmummy, I'm so sorry for what you have been through. It must've been devastating. You are bound to be anxious and your GP or midwife should be doing what they can to arrange an early scan for you. Have you spoken to your GP? Does your local hospital have a Fetal Medicine Unit? It may be worth calling them for a chat to see if they will scan you there. I have had 2 TOPs for Chromosome problems and all my scans in subsequent pregnancies have been in the FMU rather than the EPU. They may say that they can't tell anything before 12 weeks anyway but I do understand why you want an earlier scan.

I am pregnant now and this time I decided that I would go to the Fetal Medicine Centre, which is private and the best in the world (so I'm told). They are so incredibly thorough in their scanning techniques and have incredible empathy with their clients too, which is not always the case with NHS sonographers. I'm not sure how early they can detect things like spina bifida as you say it wasn't picked up until 5 months last time, but again, maybe it's worth calling them for a chat?

I'm sorry for the loss of your Dad too. It's a lot of heartbreak to take on board all at once and being pregnant again must bring back a lot of memories. I lost my Mum at Christmas and am really missing having her around to share this journey with me.

Why don't you come and join us on this thread -

It's not as busy as it used to be as we set it up a few years ago and a lot of the ladies on it have had babies now (which gives us all hope!) but they still pop in from time to time and new members also come along. It's just good to be able to talk to people who have been through similar experiences and understand the anxiety.

itsaruddygame Thu 04-Oct-12 13:26:44

Sorry you are having such a tough time. I just wanted to say that my brother and his wife aslo lost a baby in similar circumstances at 20 plus weeks. They went on to have a lovely daughter who is fit and healthy on their next pregnancy. It must be hard not to be worried sick after the trauma of what happened first time around but hopefully you will have the same experience as them.

Angelmummytochloe Thu 04-Oct-12 16:02:32

Hi havingkittens, I'm not sure if my local hospital have that in there but I will check and see, yeah I have spoken to my gp and they said. I would have an early scan and that I would see the consultant in the hospital but I have not received the letter yet to confirm that. Spina bifida should of been picked up in my 9 and 12 week scan but for a unknown reason they failed to spot it. They said my scan wasn't clear although the photos I have are very clear. Thank you I will take a look at that site.

Angelmummytochloe Thu 04-Oct-12 16:04:27

Hi itsaruddygame, thank you for your comment, it has given me hope of a healthy pregnancy this time round, I'm sorry for the loss of ur brother and his wife. Thank you again

Angelmummytochloe Thu 04-Oct-12 16:05:07

Sorry your brother and wife's baby***

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