Downs Syndrome

[divinagracia]

I had a scan today at 14 wks 2days Found out both twins are girls. We were advised to have this scan today at 14 weeks after my scan at 12 weeks in London. The scan at 12 weeks for Downs showed everything normal in both babies but one of them had Tricuspid Regurgitation which is a heart valve condition and is evident in 80% of Downs babies. Hospital said if this does not go by 20 weeks it might be a very good indication of Downs.

Today the Tricuspid was worse, although the Doctor said it does initially get worse then hopefully will settle. He measured twin 2's Nuchal Fluid and said it was not an ideal time to measure it at 14 weeks but was concerned that it has gone from 2mm at 12 weeks to 4.2mm now and with the Tricuspid flow still present this concerned him a lot. He said the baby did have a nasal bone but again this was less apparent that baby 1's. Twin 1 was doing well she had a fluid of 2mm which was far less than twin 1 and this is what he said was concerning him because of the difference between them.

He didnt want to commit too much as he said it is still early days but when pushed he said he was 'Very concerned' he offered Amnio but with the miscarriage risk even though small my DH and I did not want to do this as I dont want to risk my other baby which is perfectly fine. I also said even if it was Downs I would not abort it because again it carries quite a risk with losing the other twin and this is a risk we cannot take.

We are now in a horrible situation, I feel bad in saying it but I dont think we could keep the baby if it has Downs. I would pay more attention to that one because of its special needs and maybe I would neglect the other girl. My husband is a Long Haul Pilot and is away a lot and I feel in my heart I would not be able to cope with a Downs baby. I feel bad when I say or think this but this is how I feel.

We are happy at least one baby appears totally normal and I thank God for that. I just wish God could give me an answer, if this baby does turn out to have Downs I dont want to abort and kill this little girl at 20 weeks or 32 weeks just because she has Downs - I mean its not her fault and I beleive that she deserves her life aswell as anyone but I dont think I could cope having her as a mother. It makes me cry because does this make me a bad person? All I want is my 2 healthy girls.

In a way I am so happy for having at least one confirmed happy baby but I am so early in my pregnancy in some ways I am worried so much I feel as if I am stuck in a nightmare - I always thought that pregnancies were supposed to be a happy time. I am so sad right now

Any advice would be appreciated - Am I a bad person for abandoning this baby if it has Downs by giving it up for adoption? I feel evil

[CC]

What a terrible situation to be placed in - I really don't know what to say but I wanted to show you my support rather than not posting anything after viewing. I really can't comment on your situation - I feel completely out of my depth and really don't know what I would do or say in your position. It's all very raw though and unconfirmed and I'm sure you're also suffering from shock too so perhaps this isn't the time to be having to face big decisions. Wait and see what the next few weeks reveal and don't put yourself under any pressure to have to make any snap decisions. I know that 14 weeks (usually done between 11-13 weeks) is late for nuchal fold so there's no guarantee that measurements are accurate. The 20 week scan will hopefully give you a much better view of whether there are any major health worries to be concerned with. I'm sorry I can't be more helpful - all I can say is don't worry about being judged by anyone - only you know what it feels like to be in your situation and I'm sure no-one would think badly of you whatever you decided to do. You'll just have to make the decision that is right for you and your family - but give yourself time, so you know you haven't been rushed into anything.

Best wishes and lots of luck,

Cherylxxx

[LittleP]

Hi there

Like Cheryl, there's nothing I can really say except offer support and encouragement.

Take care of yourself and remember follow your instincts and your heart and you can't go far wrong in life. Never let people judge you and whatever decision you decide upon does NOT make you a bad mother.

Good luck

Little P

[DebraP]

I'm so very sorry you have this terrible dilemma.

My closest friend had DS + Tricuspid Regurgitation diagnosed at a 19 week scan with her 3rd child last November. She had 2 weeks to decide what to do. She used the time to meet with as many professional advisory/support sources as possible. She's religious and spoke with 2 different priests/pastors. She talked to a psychologist privately and had counselling via the hospital that did the scan. She joined DS parents groups on line and read of their experiences. As a friend, watching her and her DH go through this was heartbreaking. They considered adoption but decided against as they couldn't face handing the child over and chances are, living in the same town. To be honest, she also decided she couldn't face explaining to everyone afterwards. They eventually decided to terminate having agreed they couldn't raise their other 2 toddlers evenly. But, and this is a very sad thing to say, immediately regretted it and still do. My friend is wracked with guilt. They doubted their ability to love the child but everything that I've read said that parents automatically love the DS child, there's never any question of not loving it.

This is a horrendous decision you have to make. No one on here can do more than sympathise I expect. You'll find a lot of different support groups online, including groups for people who have just had the scan, even support groups for people that terminate due to DS. I hope you find more information.

hugs
Debra

[Susie]

Hi, I'm so sorry you are having to go thru this.
My nuchal scan showed something may be wrong with bubs heart, or downs was possible but not likely. I went thru hell from week 12 when I had the nuchal until I had a 20 week scan which showed bubs was OK.
I decided that I would of aborted my baby if he'd had downs as I knew I would not of been able to care for him and my young daughter. It is a personal choice what you do, but I think if you were to hold her when she is born you would be unable to give her away as you bond so quickly with babies.
Good luck whatever you decide, and remember everyone on here will support your decision.
Thinking of you
Susie

[DeniseM]

I also wanted to offer my support, with whatever you decide.

I have kind of a different take in that I work with teenagers with DS. And, yes, while they can be the most stubborn people you'll ever meet, they are also the most charming. And honestly - they are adorable as babies, very cute.

Read up on this before making decisions - there's lots of variations that DS can present.

Hugs, sweetie. I'm thinking of you.

[divinagracia]

THANK YOU all so much for your support my DH and I really appreciate the support you all give on here - It really does help.

To a degree we do feel adoption is a better plan because we don't feel we could give the time and attention this little girl would need without neglecting her normal sister in some ways. This is not an excuse but real reality. My hubby is always away and this would be hard for me alone and we are always travelling back and forward on planes because we live here in the UK and abroad. I am wondering would this be practical or stable for a Downs child? Although this is by far the only reason, I guess I am venting just a few of millions of thoughts and considerations.

We have spoke to the ARC charity who offer counselling and like Denise says we feel that Downs children are special, caring and have unique personalities. The lady told us yes this is true in the top percentage of Downs children but sadly for most of them they can be very restricted mentally and physically. This in turn would make them very demanding indeed. She said its very difficult to tell just where in the ability spectrum our child will eventually fall and this is what makes the decision so tough.

Termination is definately not an option for us because we have twins. The other girl so far appears normal in every way and we could not terminate and have the possiblity of losing both of them. In twins they say the risk of losing both if you do a selective termination is about 10% but that risk to us is far too great - Even if it was just 1% we still could not take the risk of losing both babies.

All is not lost yet as they still cannot tell us for sure yet, so I will continue to look to God and pray for both my girls and hopefully a mircale will indeed happen and at the 18 week scan things will show improvement.

Thanks for all your support

Love Jen

[sleepyfoy]

I just wanted to offer my support and prayers to you.... I come from a family who has a special needs child( my nephew Jesse) It was a SHOCK to all when he was diagnosed( he just turned 29) they didn't have any tests to indicated anything other than she was pregnant 29 years ago....Yeah it is a different situation I won't lie, but I honesstly can't imagine our lives without him.. We looked at it like this which may or may not help you.. Each child is gift and has their own special talents that they share with the world. Sure. one might be a Nobel Prize winner but guess what.. They both could be Olympic Atheletes!!! This is easier said than done becasue I am just an aunt.. Not the parent... It is wonderful that you are thinking about adoption and all your other options.... But also keep in mind this...... Not every test is an absoulte.. They are and can be wrong....

Try to keep the faith- you are not evil- you just want to make the right decision for you and your family.. Take care Kerri-

Jodi

[Smita]

Jen,
I just want to show my support and I will keep you and your babies in my prayers..I'm sure HE will show you the right way..Hoping with you for an improvement in your next scan..

lots of hugs,
smita

[Macca8]

Jen,

There is very little anyone can say that will make this easier for you. To go through IVF is so difficult. To be blessed with a pregnancy is a miracle but to be faced with a decision like this is just so cruel. You can only search your heart and follow your instincts.

My mother had me at 48. She was told by the hospital that I was DS. She already had 7 children. She went to mass nearly everyday and prayed to god for help. She believed if I was DS then that was only because god knew she could cope. Needless to say I am not DS, the doctors were so wrong, if she didn't have her religion to guide her then maybe she would have aborted me.
The doctors maybe wrong again, it happens all the time.

Whatever decision you and your husband make will be the right decision. Don't ever regret it, always believe that you did the right thing for the right reason.

My thoughts & support are with you at this very difficult time.
XXX

[taylorjools]

Jen

I just want to add my support to you too. We just went through the nuchal scan, but I have to say after the miscarriage last year I had decided whatever the result we would live with it, a personal choice that could have meant a drastic change in our lives.

Non of us in pregnancy knows what is ahead, Downs is one disability, there are so many others that can arise. Dh had twins with his first wife (18 years ago now) and the son who came last suffered oxygen loss during birth and had svere motoric problems for his childhood years. With loads of tlc he is now very fit, if unco-ordinated, and even plays hockey at school.

What I wanted to say was, if you have made the decision that a termination or amnio are out of the question, try and focus on positive solutions, that way your babbies will get love and positive vibes from you. Sometimes the most appartently logical decisions have emotional repercussions that last a life time. Is there a self-help group where you can talk to other parents with similar dilemmas????

You are both in my prayers

hugs

bigJ