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Pregnancy after TFMR

June 9, 2017, 9:26 am
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Hi ladies,

I am currently 5weeks pregnant after TFMR in February for spina bifida and hydrocephalus.

No idea why but i really didn't want to go through the process of calling midwifes to tell them I'm pregnant so my OH has done it today through our bearevement midwife.


I just wondered what additional support / scans etc you have received during your rainbow pregnancies? Will i now be 'consultant lead' and not see any midwives?


They had suspicions our baby was poorly at our 12 week scan and then later confirmed at 17 week scan. I really want to be scanned by a specialist for all scans but don't think theyl allow this?

Would love to hear your stories xx
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Harmony tomorrow and I’m scared!!

December 12, 2017, 12:27 pm
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Finally I am due my harmony scan and test tomorrow at 10+4 weeks. I’ve had a couple of scans already and so far everything has been ok.

I’m desperate to know the results but have the fear at the same time.


For those who have had the test before - will they measure the nuchal at the same time or is it too early for this (this was our first indicator that something was wrong last time at the 12 week scan). How did you receive your results - email or phone call?
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Anyone pregnant with a rainbow baby after TFMR for Mosaic T13?

November 18, 2017, 4:35 am
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It's a random one, but would love to hear positive stories if there are any? Hoping our mosaic T13 baby was a sad but random occurrence and we'll go on to have healthy babies! Would love to hear from you if you've been through anything similar?! X

Big Fat Positive

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20 week scan

December 17, 2017, 1:30 am
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Have my anomaly scan on Tue morn with fetal medicine and so petrified. Just had to write it down. It's felt like a lifetime waiting for this and reliving every single second with Elijah. I just can't see this being ok. I've started feeling her move, just flutters and not regular but is lovely and slightly reasuring as I don't need Doppler out everyday but it makes me so sad as I started to feel elijah ironically at my 20 week scan. I just need Tue over with and find out she's ok so I can breathe just a little xxxx

Terrific 2sBig BedFirst Ultrasound/HeartbeatBig Fat PositivePregnancy and Infant Loss

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Rainbow after the storm

December 20, 2017, 7:16 am
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August-September 2018

December 22, 2017, 5:19 am
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Congratulations to all the new pregnancies!! Use this thread to talk to others at the same stage ad you. Rainbow pregnancies can be hard but hopefully you all get your healthy babies. Wishing you all the best.

Let me know due dates and I will make a list. Xx

August
September

Pregnancy and Infant Loss

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April ~May 2018

August 13, 2017, 2:48 pm
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Hi and congratulations on your bfp. Use this thread to support each other through what is sometimes a difficult and nerve racking time. Good luck and I wish you all a happy healthy pregnancy xx let me know your expected due date and I will add them to a list.

April
5th Ally_87
10th Annie451


11th Lbizzle84
12th mmmchocolatefingers
18th lucyclaire2

May

9th jessikazaar
12th laurendavie16
14th hannaholic
23rd jjjj84
24th askthespleen


28th sweetie666

k543211( to be confirmed)
bazzaJ75 (to be confirmed)
babys13 (to be confirmed)
Samibaby_loubie_lou (to be confirmed)
(to be confirmed)

Pregnancy and Infant Loss

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June-July 2018

September 26, 2017, 3:40 am
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Congratulations on your BFP!! I hope your pregnancy journey is happy and healthy. Use this thread to support each other.
Good luck and I hope you all get your rainbow 🌈

I know it's early but once you find out edd let me know xx


 


june


29th lynala


july


14th confused369


25th juliac3


date to be confirmed 


kerryd5


emmalplayle9048


beckiphi

Pregnancy and Infant Loss

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Reassurance needed

December 22, 2017, 8:51 am
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Hi, we had our anomaly scan today and while all is measuring within normal range the femur length was at lower end of range. The sonographer was happy and all organs looked ok so she had no concerns.

We have lost 2 babies to Jeunes syndrome and part of that is short femurs so this just raises alarm bells with me. Importantly the chest was looking fine which is the main problem with Jeunes so I should be feeling relieved and happy but instead I'm just worrying about the femur length!!

I've had bad anxiety since finding out I was pregnant and think that's partly to blame but just so worried!

RainbowPregnancy and Infant LossMorning Sickness WarriorBig Fat Positive

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Extra tests and scans after tfmr

December 22, 2017, 12:04 pm
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Just found out we are expecting our rainbow baby the initial excitement has passed and now the reality and fear has sunk in .


Were any of you offered more scans earlier tests ?


Also will it be in notes for midwife about my tfmr as i dont want to have to go into it with every new midwife .


I am in scotland as i know nhs may be different here ?

Baby Dust

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Feeling awful

December 28, 2017, 2:00 pm
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I am so sorry but I just saw a post about second baby being diagnosed with Spina Bifida and I am absolutely freaking out. I know there is a chance and of course I have a percentage of me that thinks the same thing could happen but now I am thinking so so negative. I cannot begin to tell you how scared I am feeling.

How do you know if you have a folate problem do they ever check that in your bloods at 12 weeks? I had so many blood tests after the birth/loss of Freddie and even beforehand for liver problems and nothing has ever been diagnosed or even mentioned.

I have had my scan at 12 weeks and they checked the spine and said no bulges can be seen but it is too early to confirm due to bones still growing.

Please can anyone help with positive stories, I am beyond dread right now. My 16 week was moved back to next week and now I have 1 more week to wait and I will be 17.5 weeks.....

I am so sorry for anyone been in this position be I hope I don’t make you feel uncomfortable with this post. Xxx
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Nervously joining

December 30, 2017, 10:36 am
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Hello ladies

After a few months away from BC I am back with a new name previously Lucky2017 and a BFP. Expecting my second rainbow after a TFMR in November 2015.

Looking forward to sharing my journey with you.
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Is anyone pregnant after a previous Spina Bifida pregnancy?

January 29, 2014, 7:02 am
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Hi ladies!



Firstly a huge huge congratulations on your pregnancies!


I hope you don't mind me posting here but I recently had a termination at 21 weeks after discovering our second baby had very severe spina bifida. To say that was a shock is the understatement of the century. We have no history of this in my family, I have a very healthy 18 month old and I faithfully took my vitamins months before we conceived.


Anyway, I am doing really well but as you might expect, I really do want to think about ttc again. I've been on the high dose of folic acid since the termination and have been told to be on this for 3 months before ttc again. That's fine but I really need to hear from other ladies that it is possible to have a healthy baby after going through something like this. At the moment it feels impossible that I'll ever be able to have another child and god knows how i'll find the strength to go through all this all over again.



Thank you for taking the time to read this, and I really hope no one minds me posting here.


Iona x

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Im joining you all.

January 1, 2018, 1:13 pm
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Got our BFP yesterday afternoon. 8 months after losing Zachary and 6 months of trying. To be honest wasn't really trying in December but I guess life had other plans! Still in shock and absolutely terrified of the next few months ahead. Any advice on dealing with rainbow pregnancy would be appreciated. This is going to be our first baby. Just praying everything will go smoothly this time. Xx
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My Rainbow baby boy

January 1, 2018, 5:27 am
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Hi everyone


I just wanted to post and tell you all that on Friday evening I had my rainbow baby boy Dexter xxxx


I had a tfmr on 4th Feb 2017 for a baby with Spina Bifida and Hydro. I had an aching to get pregnant ASAP and fell pregnant again just under 3 months after.

It’s been a tough old road but he is here and he is wonderful and worth every bit of heartache and emotion I went through


The extra scans were always reassuring but in the back of my mind I was always worried if he would be ok.


This is him ladies xxxx dreams can happen after nightmares xxxx

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2nd baby may have spina bifida after loosing baby to spina bifida in 2014

September 8, 2016, 10:25 am
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I'm 16 weeks pregnant today and I was booked in for a scan to check for spina bifida after loosing a little girl Darcy on the 19/08/2014 at 21 weeks, also a missed miscarriage found at 12 week scan in April 2015. So basically the sonographer could not see the baby's spine and the baby did not want to budge. She was however concerned with something she could see in the brain linked to the spina bifida, she then went to show the consultants who said they thought it appeared normal but as its not a clear view want me to come back Monday. So now I have to wait all weekend worrying that I'm going to loose another baby to spina bifida!
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How to get through birth

January 3, 2018, 2:59 pm
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It's been just a year since I lost my beautiful girl due to tfmr for Pfeiffer syndrome. I am currently 22 weeks with my last baby. I can't picture him - and I can't understand how I am going to get through giving birth to him. Every scan has been perfect but I still very much have the 'If' I have him not when mentalitity. I have booked a tour around a hospital as I'm moving to a new area and I feel sick thinking about it. I have sobbed through every scan and just felt so nervous at every appointment I don't know how to process the idea of going through labour again and the flash backs of everything with Eliza. I get constant flash backs and I feel like I'm back where I was and I don't know how to see past it. How did you all cope?

Pregnancy and Infant LossFirst Ultrasound/HeartbeatMorning Sickness WarriorBig Fat Positive

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My Spina bifida Warrior

November 18, 2017, 1:27 pm
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Hi ladies hope your all well...so i dont get on much but always like to update as i know how lovely you all were when i was going through my rainbow pregnancy well what cani say my beautiful Rainbow Lyla ia now 16 month old as alot of you know she has spina bifida well she is amazing she is nearly walking which we never thought we would see for a while i actually cant wait to see ger neurosurgeon in january because i know he will be amazed as much as we are...im not going to lie some days have been tough and ive struggled with depression but i could not imagine my life without her...it doesnt take away the Pain of losing Paige who also had SB but with Lyla it helps make people mpre aware of what could be...sending lots pf love to you all xx

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Recommendations of clinics for harmony test

January 4, 2018, 6:28 am
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Hi all. I have just been told we’ve come back high risk for Down’s syndrome. I’m looking for recommendations for clinics that do the NIPT/harmony test


I’m in Essex. So ideally London or the south east.


We’ve decided against the amnio. I just want to look at reputable places and there are so many on google. Not sure we will do it yet as it’s about £400

Big Fat Positive

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Leaving already

January 4, 2018, 7:08 pm
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Hello ladies

After founding out I was pregnant a few days ago things are not going well as pregnancy is most likely ectopic.

Going to take some time away and will be back in a few weeks hopefully with a BFP and a positive outcome.

XX
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