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

Oh my word, what a terrible and dark time you are going through. I'm afraid I dont have any experience of DS but didn't want to read and run. I hope and pray for good news for you, I can't begin to imagine how distressing this is for you. Sending you lots of love and best wishes to you xxx

I don't have any experience of Down's Syndrome but my little boy was born with a rare and serious genetic medical condition. We spent 3.5 months in GOSH and then the next year was spent dealing with severe reflux, seizures, feeding aversion, tube-feeding and developmental delay. Luckily for us Charlie is improving every week and we are really only dealing with speech and language issues and blood sugar issues when poorly.
Would I do it again? I really don't know. If I found out I was pregnant again with another HI child I may very well abort just because I wouldn't want the same stress put on my children again. But the thought that I might have aborted Charlie makes me feel quite emotional. I have a lot of friends who have children much more poorly than Charlie and their lives are orientated around their wonderful children. They would see their lives as having been enriched by them, as I do with Charlie. I also know people who have really struggled with their children's illnesses though and I would recommend you make sure you have a solid support network as it is really important.

I would first get in touch with people on the Down's Syndrome website and discuss your concerns with them. After all a DS child can be physically and mentally capable and lead independent and healthy lives. But other children struggle with serious heart disease etc from a very early age.

Good luck, it's a hard decision to make.
H xx

I didnt want to r and r. I do feel for you. I know a colleague who went through a similar experience and had the amnio after much argument with her husband and it came back as clear and the baby was born healthy back in August. She said what a hard decision it was to make but she thought that would be better knowing if DS was definite.
My sis in law has a friend with a DS son and it is hard work, he is a lovely boy, slower than other children his age and hard work but lovely. I agree with the above, get in touch with other people with DS via the net and get their views and experiences as it may help both you and your partner.
I hope all turns out well in the end whatever you decide.

Hi

I'm going through a similar thing (thanks to Helen for emailing similar info which helped tremendously).

I have had 2 phone calls from MW since scan a week ago, one that they have found a varient in my heamoglobin and that the DS ratio is 1:108. Which is high risk...after a lot of thought/tears, we will be having a CVS on Thursday, and as yet I'm not overly worried about the results, I can't change those,what I am worried about is the risk of miscarriage. Even though I have read and heard lots of women whom went on to be fine!

I keep telling myself, there is 99% chance that all is fine and 107% that baby is fine. And i'm finding this very hard to keep hold of, all I keep seeing is what I thought would be a lovely first pregnancy just going wrong! Even though DH keeps saying that it will be fine and we'll be back on track in 2 weeks time.
I have a terrible rash round my neck that developed overnight since the MW called, which must be a stress rash.

I know this may sound harsh, please don't take it as so..but I'm glad you are all sharing this as it makes me feel that I'm not alone!

I wish you all the best, try hard to focus on the postives! Thats what I keep telling myself...whatever will be...will be!

Lots of hugs,
D xxx

Anxious Mumma and Donmal check your pm inbox.

You are not alone. Have gone through similar in the last 5 weeks and has been a very dark time.

Wishing you luck xx

So sorry to hear what a upsetting time you are having at the moment. I have a little advice about having a baby with DS.

My daughter was born 5 weeks ago and when she was 10 days old she was diagnosed with DS, my NT screening came back as 1 in 6,200!

The first week of finding out was very upsetting and extremely hard almost feels like a dream. Looking back it was mainly because it was the unknown and things we do not know about are scary.

The information, support and people I have met in the last couple of weeks have changed how I think and feel about DS massively and I am no longer scared and very positive about the future. It really isn't as bad as I had imagined, the early intervention which is available is great, for example Eloise starts physio on Thursday, to help develop her muscle tone, etc!!

If your results do come back as DS its not the end of the world just a slightly different one! You will still love your bubba just as much..... prob more! Eloise melts my heart everyday and im so grateful to have her.

I won't ramble on as its prob best to get your results first but if you have any questions please, please feel free to ask.

Take care

Rachel xxx

PS - If you have a look in the Due in Jan forum there are a few pics and what happened, etc if you wanted to know x

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thank you so much for all of your messages. These have been a great source of support for me over the last week.

Like others have said, it is nice to know that their are other people out there who have been or are going through similar experiences. I haven't been able to speak to any of my friends about this because it felt too painful, you have all made me feel less alone.

Rachel, Blondefriend and Helenlouise - your stories have inspired me to be brave, and to stop feeling so sorry for myself : ) I haven't been able to face work yet, especially as they don't even know I am pregnant and tummy is definitely getting bigger! But I have at least been a bit more active these past few days. I may even get round to cleaning my bathroom this weekend, my mother would be appalled if she saw it right now :/

And I must also congratulate you Rachel on the birth of Eloise, she is such a cutie and I am so pleased to hear that she is now a little piggie. If there is one thing I am sure of then it is that I will never get rid of this baby and love it all the same, DS or no DS.

In case anyone is interested I got the results from my integrated test as couple of days ago and they were 1 in 22,000 (!!!). We couldn't believe it, my partner asked me if I was sure when I rang to tell him, and I had to read the results again just to check myself. My HCG has gone down but it's because of the additional markers they measure that the risk has decreased.

I'm a bit unsure about how to take this news. Mum and Partner are now at least agreeing that there shouldn't be an amnio, but I know that we could still be that 1, and that the femur length and lack of nasal bone could mean the actual risk is higher. Although I did read that there are ethnic differences in these measures.

The place that provided me the results have said the pattern is more indicative of IUGR than DS, and I would have to agree given I had already researched this and found evidence to suggest the same.

I have an app next Wed for a possible amnio, although I am 99.9% sure that I will just have a detailed scan and leave it at that. I guess I just have to wait for that scan and the experts opinion.

Whaetever the outcome is I should try to get back to normality after the next app, time to start living again.

For those of you going through similar experiences it would be great to hear how you have got on since you last posted, if you are happy to share. I must point out that even though I've said an amnio isn't right for me and that I would still keep a baby with DS, I do appreciate that everyones circumstances are different. I have a fantastic partner who takes excellent care of me, and we both have family who would help.

All the best, Anxious_Mumma xxx

Hi all,

thought i would update you and hopefully offer hope and courage to those in similar situations.

I had my cvs on thursday, was a little uncomfortable but all has been fine and our first lot of results came back last night and all is clear, so we are over the moon.

Hope whoever is in this situation will get a good outcome too, if anyone would like to email me to ask more ( i know it helped me!) please do not hesitate and thanks to all those who offerred me advise and just a friendly chat!

D xx