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Meet a Member of FoD – Baby Kezia’s Story

September 9, 2012 By MamaK

After 8 years trying to have kids with my ex husband, you can imagine my surprise when, less than 6 months into a new and fairly casual relationship and just after my 37th birthday, I realised I was pregnant. It’s not that I don’t understand cause and effect, I had just assumed it would never happen to me.
 
As my periods had been regular as clockwork since some gynae procedures about 18 months earlier (and, let’s face it, 8 years of becoming hyper aware of my cyclical monthly changes), I started feeling a strange mix of hope and desperation (in case my hope once again got dashed) within a few hours of auntie flo turning up late. I called my best friend, just because. I managed to wait 2 days before finally deciding to do a pregnancy test.
 
I had been working late and met my OH at the pub when I finished. On the way back to his flat he wanted to pop into tesco for supplies and I put a (cheap, 2 pink lines style) test in the basket! First he knew. We hurried back to his with him all excited at the prospect and me trying to play it down and not get my hopes up. I peed on it, got 2 lines (although one was faint) but managed to convince myself and OH that the test was faulty and sent him to the local 24 hour garage to buy another one,but they didn’t sell them.
 
So, next morning I bought a digital test on my way home.. Peed on it and then realised that it didn’t work as it was 6 months out of date. I bought 2 more on the way to work and tried again, but this time missed the stick with my pee! I was now well and truly peed out.. I drank a pint of water and had a coffee and then drove to my first appointment of the day. On arrival, I disappeared into the loo, finally managed to pee on another stick and got the result “pregnant”. I stared at it for a few minutes, fully expecting the “not” to appear afterwards like a cruel, teenage prank, before I sent OH a text and then get game head on to deliver a 2 hour seminar on Domestic Violence.
 
I was ecstatic. Completely over the moon. And miserable as sin as I faced a forseeable future of no smoking, drinking or blue cheese. I had a total and utter miserable grump on for at least a week.
Fast forward through the proceeding 2 months which included moving in together, 3 early scans I got St Thomas’ hospital in London and the best Christmas EVER telling my parents they would be finally getting their first, long awaited grandchild. As 12 weeks fell on boxing day I had my growth scan at 13 weeks. My parents came along to the scan with me and we were all excited to see the baby, who was now identifiable as such and seemed to be flicking us the bird.
 
My first inkling that something was wrong was when the scan went on longer than expected and the sonographer was muttering to herself and then mumbled something about having to get her boss. The crux of it was, that despite opting out of the screening tests, the nuchal fold (a tiny measurement taken at the back of the baby’s neck) was much larger than it typically should be, indicating possible physical or chromosomal differences. After a moment of stunned silence, my Mum piped up “oh well, we will all love it anyway”, which just about summed it up. We were invited to return the next day to see a doctor to “discuss our options”.
 
 
Return the next day I did, this time with OH instead of my parents. I was rescanned and we were essentially told we had a 1:3 chance of a chromosomal problem, of which Downs was the most likely, and a 1:5 chance of a physical problem, of which a heart condition was most likely..
 
Because of my age, OH and I had talked about the possibility of having a baby with Downs. One thing we had both agreed on without arguement is that we would not terminate nor would we have an amnioscentesis or CVS due to the risk of miscarriage. Although low, neither of us wanted any procedure that carried such a risk. We talked things through at length with the Doctor, and came up with an agreed plan, that basically meant we would have frequent scans to look out for physical problems, the second trimester blood test to screen for chromosome differences and possibly a late amnio at 34 weeks so we could get a pre birth diagnosis.
The doctor seemed somewhat surprised by our decision making and we were offered an amnio at the 3 following appointments. It is only now that I know that 90% of people would have chosen to abort the baby in our situation, that I understand the approach taken. I do wonder how many people who had not taken the time to investigate might have been taken down a road they might not otherwise have chosen, just because it was expected of them.
 
In the course of the next few weeks we had a number of results. The blood test came back high risk, a hole in the heart was detected and some fluid around the heart all stacked up the odds more towards Downs. Funnily enough though, the deciding factor for me was the femur measurement coming up short! OH and I are both quite tall. In my head this, the most unreliable and vague of all the indicators, was the one that made me believe that my baby would have Downs Syndrome.
 
It took a while to get my head around things. The most difficult time was leading up to the 20 weeks scan, when the chance of there being a problem incompatible with life was much higher than the average pregnancy. As time went on and we could start ruling stuff out it got easier and easier. For me, a live baby was what was important, not what diagnosis it may have.
 
I shed tears, wailed “why me” and threatened to punch the next person who said “the baby would be lucky to have me” (quite frankly, I was thinking about myself at this time, and I didn’t feel lucky). However, on February 14th 2012 I felt real kicks for the first time. There had been flutters but this was unmistakable. From that moment on nothing else mattered. I loved my baby no matter what. I could feel it move and I had regular reminders that something was growing inside me. Kicks grew stronger and turned into alien baby rolling that looked most bizarre from the outside. As space got more limited, the hiccups increased (the baby’s, not mine) and I would take great pleasure in watching the bump jerk up and down.
 
And so to the 34 week growth scan. We decided we did want an amnio. By this time I knew there was something different. If it wasn’t Downs it was something else, and at least I knew about this particular syndrome. We had the test on the Monday, where we were also told the baby was quite big, and a consultant appointment on the Thursday. The specialist midwife came to see me at the clinic to tell me the diagnosis had been confirmed. I just felt relief that a) I finally knew and b) it was Downs, rather than anything else that I was ignorant about. However, that same day, I was also told that due to the baby’s size and proportions, they wanted to do a cesaerian section at 37 weeks, just over 2 weeks away! THAT was the information that left me gobsmacked!!!
 
The surgery itself went pretty much according to plan. We turned up, waited around for a bit, made stupid jokes, etc, etc and then went in to a theatre full of strangers to whom I bared my bottom and subsequently a lot more whilst they cut the baby loose. The screams were, unexpectedly, immediate. OH announced that we had a girl. That was also unexpected as we were both convinced we were having a boy, even though we had chosen not to find out the gender at the scans.I made him check!
She was a blue baby so I had a brief cuddle and photo before she was whipped off to special care and I went to recovery. I then didn’t see her for 7 hours as I had to wait for the epidural to wear off enough for me to be fit to go and see her. To be honest, she looked odd. She had a lot of retained fluid and so was really puffy. I also struggled to associate the baby in my arms with the missing bump. I don’t know how she fit in there for a start. She was only in SCBU for 24 hours and by the end of the first night on my own with her I was as besotted as her dad had been from the start.
 
Kezia (meaning spice tree – my nick name is tree) is simply the most beautiful baby I have ever seen. I feel sorry for everyone else I know as their babies are not as cute as mine. Luckily they all seem to feel the same way 🙂
 

Filed Under: Blog

About MamaK

Mother, wife, general dogsbody, but I wouldn't have it any other way!! My three girls are the light of my life - Ava (Mar '08) is kind, clever and a joy to parent. She is destined to be on the stage (drama queen!!). Seren (Jun '10) is my beautiful little munchkin - officially diagnosed with Down's syndrome minutes after she was born, but we had an inidcation through a *high risk* Triple Test that she might have DS (we refused the amnio). Baby Violet was born in April 2012 and is learning to survive the bone crunchingly enthusiastic cuddles she gets from her older sisters... My wonderful husband Matt is a fantastic dad - our house is full of love and laughter!

Where To Turn

  • Future Of Down’s Facebook Group
  • The Down’s Syndrome Association
  • Cerebra
  • Down’s Syndrome Education International
  • The Down Syndrome Research Foundation UK
  • Down’s Syndrome Scotland
  • Down’s Heart Group
  • Home Start
  • Contact A Family
  • The Family Fund

And there are many more useful contacts and support resources on our pages.Down's Syndrome Association


 

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