A couple of months ago I emailed Manda at Treefall to offer my sympathy when she had some bad blood test results for her long awaited MP2. She was worried about risking an amnio and having been through a similar experience with Alex I wanted to email her to let her know she wasn't alone. And I wrote that I was trying to get pregnant but already terrified of being in that very same position again. As it turned out everything was fine and someone somewhere had input the wrong due date which skewed the results. I was so relieved for her as Manda and I have very similar tales; same age, a history of infertility and miscarriage and mercifully we both have a much loved toddler at home.
What I didn't expect was to have an almost identical experience to hers.
We had booked a private nuchal fold scan for 12 weeks as it is a more thorough scan than the NHS dating scan and it is combined with a new early blood test result. Our reasoning was that if something was wrong the earlier we knew about it the better and the longer we would have to come to a decision about amnios and futher testing etc. At my age (38) these things are heavily recommended and as I have another child to think about I was keen to know as much info as possible.
The scan was fine. The baby looked healthy (and waved at us) and the nuchal fold measured 1.4 which is spot on. We breathed a huge sigh of relief as Alex's nuchal fold had been 2.5 and just on the borderline for abnormal ( we chose not to have an amnio with him). I finally let go some of my fears and let myself believe we might be having another baby in May.
But then we moved over to the computer where the consultant inputted all the data. His face fell and he muttered something. I looked at the screen and my heart stopped. The Papp A blood test results came back with a 1 in 17 chance of Downs (should have been about 1 in 250 for my age) and 1 in 200 for Trisomy 13 and 18 (should have been 1 in 1400). I just couldn't take it in. Seconds ago everything had been looking rosy and now everything looked blacker than black. My poor beautiful baby. Then I just broke down and started sobbing so hard I couldn't speak.
The consultant double checked the results with the lab which confirmed them. There was no chance they were wrong. So we left and drove home through the pouring rain with tears falling down our faces. We talked and cried and cried and talked and then we retreated into exhausted silence.
I couldn't believe we were in this situation again. Although this time the statistics were much much worse than they were with Alex. There was so much to think about, what impact it would have on Alex and his life, how would we deal with things, what decisions could we with live with and which were just not possible . I made a decision a long time before we had Alex that we could not terminate a child with Downs. It really helped me to know that I had made that decision already but I was worried what impact it would have on Alex, especially if the child has serious medical problems such as a heart defect (common in Downs). What really worried me worst of all were the trisomy 13 and 18 results as they are supposedly incompatible with life (edited to add - please see Therese Ann's comment!). I had known there was a chance of all this happening but the scan had lulled me into such a state of false security that I just couldn't get my head round it at all.
When we got home we just hugged each other for a long time. And then the phone rang and it was the hospital. The consultant has stayed behind to go over the data again and again. And he found one of the dates was wrong. When he changed it it changed the results - back to normal.
The risk went from 1 in 17 to 1 in 650 for Downs and 1 in 200 to 1 in 14000 for the other trisomies. So we went from happy to desperate to pure joy in the space of a few hours.
So my thanksgiving day was spent thinking how incredibly lucky we are. To have one wonderful child and another one hopefully on the way. That some people never get to have children at all. That we may have got bad results but we got a phone call that changed all that and gave us the most wonderful good news. That most people who get bad results don't get that phone call later. We are so very very grateful.
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4 comments:
Ruth, I'm so very happy your news is good. I pray and hope your baby grows beautifully and perfectly healthy.
I found your blog as you mentioned trisomy 13.
I have a living trisomy 13 child, she is now 7. I wanted to share this site with you so you know their is always hope, even with a poor prenatal diagnosis. Many of these kids do reach their mothers arms.
Living with trisomy 13
http://www.livingwithtrisomy13.org
Many Blessings,
ThereseAnn mom to Natalia - full trisomy 13
California USA
Thank you for your comment Therese Ann and the link to your site. It is people like you who give us hope when we get bad news. Knowing that there are other people out there who understand is a real blessing. Thank you so much for taking the time to comment and pass on the info. I wish you and your family all the best for the future.
Ruth I'm so relieved for you all - our second was conceived just after my 35th birthday and our last was born just before my 37th so this sort of testing was a consideration for us - DH wanted to have an amnio, I (having had a miscarriage after #1) wanted life to take its course. I've no idea what changed DH's mind over the course of a weekend but without any influence from me he came round to my viewpoint and we went on without any testing - we were lucky all our three are 'normal' children and we had no handicaps or abnormalities to cope with. Nature is a wonderful thing but it does make you realise how easily things can turn out differently. Take care and I hope and pray everything continues to proceed well for you all
Wosh...that was a biggie, I am pleased the outcome was much better. Pregnancy is such a scary time. I was going to have tests with my second child, I ended up making the scary decision not to, my mid wife assured me I was doing the right thing, I produced a beautiful healthy babe....it also turned out that she had a downs child herself.
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