Hey, I posted this to my Facebook yesterday and thought it may be a good idea to post on here to😌

Our story so far..

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As most of our family and friends know, I’m pregnant with a precious little girl but what you don’t know is that she was diagnosed with mosaic turner syndrome at 13weeks.

I've been writing and rewriting this for months now, I've put it off for so long because it makes eant that I didn't have to put into words what we've been through but I've decided after many attempts to just do it, there's no time like the present and if I can raise awareness and help someone going through similar situations it would mean the world to me.

Today I'm 35weeks 1day pregnant with 34 days to go until our little miracle is due! 😌 I feel beyond blessed to have made it this far, after being told your Daughter only has a 2% chance of survival throughout your whole pregnancy has been very heartbreaking.

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After getting so excited about our 12 week scan we were told "there is something wrong with your baby", it was a massive shock.

I had a invasive test (CVS) 3 days later due to our babies very high NT measurement and after what was honestly the scariest week of our life, where seconds felt like hours and hours felt like days, it was torture waiting to see what the diagnosis would be and wondering wether or not our baby would survive the invasive test.. The results finally came through a week later.

I had done a crazy amount of research that week of every possible diagnosis, literally for every minuet I could. 

The second the consultant said the diagnosis was most likely..

"Turner syndrome"

I knew what it was and I knew that we were going to have a daughter. I was so happy, I had just found out that we're having a precious little girl! From that second I didn't care that she had Turner syndrome, I didn't care that she's not going to be the "normal" baby everyone is expecting, I didn't care about any of it. All I wanted was to fast forward to the day she is born so I could hold her tight in my arms, to kiss her and tell her that she is beautiful, that she is perfect and no matter what she looks like or how many TS symptoms she has.. her Mummy and Daddy will always love every single inch of her inside and out.

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For 12 weeks up until the 25th week of pregnancy I was offered termination for medical reasons again and again but not for a second did I want to, no matter how bad the diagnosis was I personally would not have terminated, not even for Down syndrome (which I thought the diagnosis would be) or for the more severe conditions it could have been. It has been so hard, stressful and scary, I could have easily terminated because of all the stress and all the not knowing what's going to happen because she has a 2% chance of survival like the consultant kept reminding me. But how would I know what would happen if I didn't give our little girl the best chance at life, even if her life is only inside me.. at least I know I have done everything I possibly could for her.

I would be absolutely broken if we lost her but I'm so hopefull that she will be okay, she's done incredibly well these past 35 weeks and has made us beyond proud getting better and better at each scan.

At one point she had a massive amount of fluid on her lungs that had moved her lungs and heart completely to the right side of her chest and there's been fluid around her abdomen and around her neck her whole life BUT she has shocked the consultants and nearly all of the fluid has gone from her body and lungs, her heart is still in the middle of her chest but thankfully it's not been a worry so far. We get to see our daughter for the 13th time next week, for her 5th heart scan to see how amazing she is doing and to make sure that she still doesn't need a heart operation when she is born for narrowing of the aorta.

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After going through all the stress and the uncertainty we've had this year, I can't believe that there is only 34 days until her due date! It feels so surreal, all I've done is hope and pray this whole year that we get to keep our precious daughter, to show her all the love she has waiting for her on the outside. I can't imagine I could love her anymore than I do now but I know I will.

She's strong and she's a fighter.. Just like all the other Turner syndrome girls that I've had the privilege of talking to. I'd just like to say to all the TS butterflies living with or know someone who has TS, just remember you are strong and beautiful! You have such a good support system with everyone at TSSS (Turner syndrome support society). I'm proud to bring our daughter up with such a supportive, strong group of women by her side. Turner syndrome hasn't stopped any of you from pursuing your dreams and if my daughter is half as determined as you ladies then I will always be proud.

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I personally don't think there is enough information at hand about the conditions that our baby could have had when we found out there was "something wrong". I felt like the consultants were just telling us the worst possible thing and not actually telling us anything positive. I know it's their job to tell us the worst but sometimes the worst doesn't happen. We were left worrying and had to research for ourself, wondering if our baby was going to survive or how bad the diagnosis would be.

Turner syndrome isn't as bad as the consultants made out, yes there is a 2% chance of a baby surviving the pregnancy, but once born every Turner syndrome girl is different with many having just a few of the symptoms, some having more and some girls not even being diagnosed until they're teenagers or even adults! Leading very "normal" lives.

It's scary that if I had listened to the advice of the consultants when I was scared and in shock like many people have probably done without fully researching what their child has, then my daughters life may have ended already and I wouldn't have had the chance to feel her magical kicks or her hiccups and we wouldn't have got to see her stunning face smile and yawn on the 4D scan.

I'm so glad that I had spent those many hours researching and being so strong with my decision not to terminate, I'd never give up on my baby but I can see why so many people do terminate for medical reasons as it is the scariest thing to ever go through knowing our baby isn't well. 

(I'm not against abortion and not saying that you shouldn't have a abortion or TFMR if you want to as it will never be a easy decision to make. I'd just like there to be more information, support and awareness for people who get told "there is something wrong with your baby".

Also I'm not bashing the work of the consultants and midwifes, they have been amazing, just at the beginning of this whole journey we felt so alone and like there was no hope for a good outcome)

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I've started a fundraising page on gofundme called "Baby L fundraising" to raise money for the TSSS (Turner syndrome support society) and other charities like the ARC (antenatal results and choices), Sands (still birth and neonatal death), kicks count charity and down syndrome association that will help other people going through similar situations as us.

I've set the goal to £1000 but I don't expect to reach it anytime soon, just give what you can wether it be 50p or £5, every penny helps and will go towards helping someone going through something that you yourself may one day find yourself going through to. 

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Thankyou so much for reading and if you can PLEASE share this even just for a day as it might reach someone who would like more information on Turner syndrome / charities that could help them or even just someone to talk to who's going through the same as them as it is a very lonely situation to be in.

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Share, like or donate and please pray for our little girl, all would mean so much to me and my family. 

Thank you, Tara

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