Dear All,
I do not normally write on message boards but I need an outlet for my feelings, feelings which I don't feel confident those close to me can fully understand.
Today I am 14 weeks and 4 days pregnant. I am pregnant much quicker than we expected, we only tried once, and as I did not know that I was pregnant for a little while I continued to drink, which is when my anxiety started. Don't get me wrong here, I did not drink massive amounts, luckily my body told me to slow down before my mind knew it, and I ducked out of numerous drinking events from tiredness.
Feeling anxious, I decided to keep the pregancy quiet until the 12 week scan, as I am told most women do. By the time I got to 11 weeks I started to believe that I was actually going to have a baby and get excited. I know my Mum was pleased because she had been so excited since the word go and thought I was silly to worry. Let's just say a few cross words were said at times due to her spilling the beans to family and co-workers. As you can imagine this went down really well, every mother loves to be told off by a child.
Around this time one Friday evening at work I started to bleed. I called my partner and doctor in a panic. I was told to wait until my 12 week scan which was luckily due on the Monday. I do not like waiting and I spent the whole weekend worrying and crying. What about all my dreams...
We had the scan (my partner and I) and were so happy to see our little baby moving around. My tears of anxiety turned to tears of relief, it was OK. Although the baby was slightly small we were told the NT was well within the normal range, that the baby appeared normal and had a strong heartbeat. I still did not know what was causing the bleeding, but I was positive that everything would be alright. Bleeding does not inevitably lead to a miscarriage, and in this case it hadn't, so far.
I had my blood taken for the DS test, soemthing I had really forgotten all about in the midst of my anxiety, and was told that if there was any problem I would hear by Friday. I didn't hear anything by Friday, and although the bleeding remained, my positivity grew.
On Monday morning I received a call from the hospital. The possibility the baby had DS was 1 in 10. I was too upset to kick up a fuss about the call coming late, and the timing actually turned out to be fortunate as were were both on annual leave and at home. I spent a lot of time crying that day. I've spent a lot of time crying ever since. The lady talked me through the options of CVS and amniocentesis and we agreed that I would come in for a scan and possible CVS the next day. Given the risk of CVS I knew that there was no way I would have this, but I wanted the scan. Was my baby still alive? What was causing the bleeding?
I got my hair done that day, it was already planned and I didn't know what else to do. We spoke about DS and what it would mean for us, I had always said "we would still keep the baby wouldn't we?" "Just because it's not perfect"... But I couldn't sleep that night, I cried, I wallowed in self pity. Did I really want a baby with DS, everyone would laugh at it, I would resent it and be happy for when the time came to have a 'normal' baby. I told my partner I didn't want a baby with DS, that I wouldn't be able to cope. He agreed and we discussed having an amniocentesis.
Happy Valentines Day! All previous plans replaced with a trip to the hospital, and the parenting book I bought my partner as a present served as a sad reminder. There was no CVS, the DR concluded this would be especially risky given the blood, which I now knew was coming from a blood clot in my cervix. I did not want one anyway. With a result of 1 in 10 she said an amnio would be a 'no brainer' unless I had serious religous beliefs against getting rid of the baby. Though I have no doubt of her technical competence she did not ask me questions, she spoke at me, and made presumptions. This made me angry, my partner thought she was great. Because you don't want a down syndrome baby I thought. And the seeds of doubt planted by the darkness of the night before started to lessen, though I was too scared to say.
I agonised (as I still am) over the possiblity of miscarrying from an amnio and decided I would do everything I could to decide whether this was really neccessary. I called up to get my specific results from the screeining (combined test). Why had I not been given these before? A result of 1 in 10 without the information on my hormone levels, I felt insulted, did the NHS feel women could not be trusted to intepret this information, so better the withold it. I thought back to the conversation when I received the noews of this rating and the amniocentesis procedure was explained - "the needle is put into the bag of the water"... "Urm I'm sorry what?" "The amniotic sac". Please don't assume I am stupid, I did read my screening leaflet, even if my partner didn't. If only I also had the choice to stick my head in the sand. Everytime I bled I worried about miscarriage, and everytime I felt sick or caught a glimpse of my growing belly I feared for the health of a child I also feared I may never have.
I decided to pay for an integreated test, a test which looks at more markers, to see if the results would come back any differently. The place I had it done also repeated my first screen which is based on NT, HCG and PAPPA-A. They had to take fresh bloods because they would analyse them using a slightly different system in their lab, a more advanced system I am sure given their research in this area. I did not have to wait long for the results - I got them the same day. The service and speed was phenomenal. My PAPPA-A had slightly increased given me a risk of 1 in 90. My HCG levels were still astronimically high, I realise I haven't mentioned this until now. This is something that also worries me, as far as HCG is concerned I an outlier. I spent hours research my results on the interent, even if our baby doesn't have DS I know there is still an increased risk of poor growth, early delivery and pre-eclampsia. Anyway, the 1 in 90 chance gave me some hope, and I at least felt like I had done something, something good for my baby. The final blood test and results are due next week - I am not holding my breath for a miracle, even if the risk is profoundly reduced, this may make no difference to what happends next, but I am interested to see my other hormone levels. I would rather know more than less, which is why my partner tells me off for my obsessive online researching.
From this online research I learned that absence of a nasal bone can also be a marker for DS, and booked in for a private scan to look for this. Something which is once again not available on the NHS. I am not convinced by the combined test offered on the NHS, it seems there are many more advanced and better screening tests available. I understand that the NHS can most likely not afford these tests, and as I read in one of their papers asking people to come back for two blood tests could be problematic and lead to error. But please - at least let people know about the other private testing options available so they can decide whether to use the NHS. Don't hide the truth for the sake of worrying about complaints, people deserve the right to a choice.
So we had the scan, femur length was very short, heart rate was slightly outside of the normal range, and no nasal bone could be clearly detected. This was not the best news, and as with all my appointments I left in a flood of tears, they were dropping from my face as I tried to hide myself in reception, at least they let me leave through the back door. Femur length, I have learned, used to be considered as a soft marker for down syndrome, and is sometimes still used as a marker when others are also present. Elevated heart rate is also a marker of down syndrome. As I have said so is the nasal bone - but there are racial differences which could account for this - you have to live in hope right.
One thing that puzzled me is that the crown to rump length of our baby was measured as shorter than our last NHS scan. This simply cannot be right! Perhaps through denial - I am now hoping that the femur measurement may also be off.
All this brings us up to now really. The only other thing to mention is that I have stopped bleeding and I am now booked in for an amniocentesis in a couple of weeks at a private clinic. I read that the more experienced a person is the less chance of miscarriage, and I am having one of the best. I am still unsure I want this test, especially as during the days that have gone by I am now growing incredibly surer that I want this baby. DS or no DS. I hope my partner will start to feel the same way soon. I do not want my first experience of labour to be that of giving birth to a baby I willfully killed. Unless of course there is something seriously wrong and it would be kinder. But then what makes a life worth living?
For now I must sit tight, try to cope, and wait and see.
I send my thoughts and best wishes to anyone who has gone or is going through a similar situation. Any thoughts on how you coped with a time of uncertainity and your experiences of raising a baby with down syndrome would be very much appreciated.
Love Anxious_Mumma
P.S I hope there isn't a word limit on this forum