Obviously we started to tell friends and family, but we still didn't have much of a grip on the situation.
Google search became our best friend for several days (though I'm not sure if this was a good thing or not!). Unfortunately, most stories that we read of pregnancies involved complications, and resulted in miscarriage. Sometimes before 12 weeks, some after, some in weeks 20 and 30.
We soon stopped reading forums-whilst they were a source of personal experience of others, at that time we found it too hard.
The one thing I do remember is that I had the best night sleep in weeks on the night of the diagnosis, weird huh?! I guess it was the relief of finally knowing something.
Tim, as always, remained as strong as an ox, he had a few wobbly moments for a few days, unlike me who had a whole week of being an emotional wreck!
Friends and family were amazing during this time, they wanted to know as much as we could possibly tell them, and were that at every turn. My brothers reaction surprised me the most - he genuinely seemed so angry and upset that this could happen to us, in his word "of all people, you two don't deserve it". I was pleased that he cared so much.
We had a magnitude of questions, and with the help of google, consultants, midwives, and the turner syndrome support society UK (who are an AMAZING charity), some were answered.... I thought I'd do our own little Q & A here as you may want to know similar things
Our Turner Syndrome Q & A
Was it something that we 'did' ? Almost instantly we found out the answer to this was no, it was pure fluke, accident, whatever you wish to call it.
How many pregnancies does it affect? Around 1 in 2500.
Will it happen to us again? The chances are extremely slim.
Will our child be able to live a 'normal' life? Many people with Turner Syndrome go on to live a happy and fulfilled life. They will face some challenges that others don't, but to what extent will depend.
If the pregnancy makes it past half way are the chances of survival better? There are no statistics to support this. In fact, no statistics other than 98/99% end in miscarriage or stillbirth, seemed to exist. That one keeps haunting me.
How many people in the uk have Turner Syndrome? Around 10,000
So you may be wondering what Turner Syndrome is, or involves. We won't go in to great detail here as many pages (such as NHS and TSSSuk) will have much better info. For us the key info is:
- Our baby is a GIRL- yay!
- She is missing one of the sex chromosomes, so only has 1 x in pair 23
- She will have growth problems, without treatment most girls are between 4ft 4 and 4ft 10 at full height (though as her daddy is a shortie-no one will guess!)
- She will need hormone treatment, possibly injections, possibly for much of childhood and teen years
- She will have fertility issues
- Heart problems are a potentially major complication during pregnancy, and possibly after
There is a list longer than my arm of other potential problems -speech, ears, maths, spatial, social...... HOWEVER these are only potential problems, and could also affect Joe Bloggs.
What happened next in terms of medical care?
2nd October
The week following the diagnosis, we were sent to John Radcliffe specialist hospital in Oxford for baby Chappos first heart scan. Here we received our first piece of good news-her heart was developing as it should be, HURRAY for good news. We were told though that complications with the heart could occur at ANY point, hmmm not such a big hurray.
16th October
We met with our consultant for the first time (I say we, this was the first appointment I attended alone as I thought it wouldn't involve much). I don't have much to say here, other than our consultant was realistic-which in my eyes came across as negative and pessimistic! I left feeling dejected-Tim vowed he'd be there next time!
23rd October
Our 20 week scan-just like an other normal pregnancy (what was normal now?!). Dr Chamberlain, who performed the amino wanted to carry this out, much to our relief as he was fab. He was extremely reassuring and talked us through every part of the scan, and to our surprise, everything aspect of baby was developing well.
As we left the scan room, I burst in to tears. Tim looking concerned, asked what was up. My only words were that I was so happy!
So, there we go, up to 20 weeks. One more post should catch you all up, but in the meantime I've included baby Chappos 20 week scan-we amazed at how clear it was! It now sits alongside the 12 wk picture in our kitchen :)
I also wanted to mention that by this point we were absolutely fine with the diagnosis. It was the hand we were dealt, and Turner syndrome babies/children/ adults and their families seemed truly amazing and inspirational people. Whilst me and Tim have different views on religion, we both felt that we were lucky to have our baby girl still at 20 weeks, and that what would be, would be. I prayed every day for our baby, and that we have the strength and support to get through this.
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