21 Weeks Major Heart Defect Found W Possibility Of Down Sy

42 Replies
B - October 8

We found out on Monday after our routine ultrasound that the baby has a major heart defect typically found in Down Syndrome babies. We had an Amnio and quad screen and are awaiting out test results. My husband and I are trying to prepare for the worst. We are completely devistated, and do nothing but cry or walk around sort of dazed. We have one other child. 7 yrs old. Are we awful people for considering termination if we find that the baby has a chromosonal abnormality on top of a severe heart defect? We feel sooooo ashamed and scared. But we know in our hearts that it just isn't what we want for our family for so many reasons. We keep talking about ways to make it work. But just can't. Please offer some support if you can.

 

... - October 8

Hi..I am sorry to hear about the baby's condition..This child will need to be taken care of for rest of his/her life..Can you go through with it? How about financially? What kind of future await this child? Will the child want to live this kind of life? In/out of hospital? Never to lead a normal life..You can get some advices/support, but ultimate it's you guyz that bear the responsibilities..Do not be ashamed..My wife and I trying to have our first baby..My wife m.c at 14 weeks..We always thinking of what did we do wrong to cause the m.c..(we hear the h.b)..What we did to deserve this..It's so hard...but life goes on...and all kind of wonderful and miseary created everyday..That's part of life. Good luck!

 

meg - October 8

I don't think that you should feel ashamed b/c you have not done anything, yet. To be honest, I was once in your shoes thinking what if my child has downs or is really very ill, what would I do? Well, God made that decision for me and I had a miscarriage. To this day, I say to myself, if she was sick or had an abnormality, I would have wanted to keep her. You can't get this child back if you terminate the pregnancy. Don't you want to hold her? See what she is like? Even if she is so very ill, she could make someone's life so much happier, even your own. You are 21 week pregnant and you are half way there. Who actually asks for a sick child? I'm not trying to judge you, but am just telling you what I would do if I were you, especially after losing a child. Is that something you are going to be able to handle if you do terminate your pregnancy? Well, I wish you luck with your decision and I hope your test results are good ones. I am very sorry that this is happening to you and I will pray for you and your family.

 

sad - October 8

I'm so sorry. It's terrible to find out bad news about your baby and even more awful to have to make a decision like the one you are facing. You need to do whatever you feel is right for your family. You are not awful people - just human and trying to make the best decision. Good luck to you.

 

B - October 8

Thanks for all the replys. I really appreciate all the opinions. To ... Thank you for your understanding and in answer to so many of your questions the sad truth is simply, no. We do not want to care for, worry about, put in the hospital, financially support, watch struggle, witness the suffering of,etc. a child with a major physical and mental handicap. I absolutely tip my hat to anyone who chooses to. But, for us, all things considered, we can not do it. Frankly, I wouldn't want that kind of life myself and if someone was able to spare me of it I would be most thankful. Meg, I totally understand your position. And yes, I do want to hold him, cuddle him, tell him I love him, and see what he might be like....desperately. But I can't let my emotions fully make this decision. I have to think of the future, for this baby, if it survives, will only be a child for so long. I need to think about who will take care of this person if something were to happen to my husband and I. The answer is know one..... but my older son. I also need to think about the fact that we are not finacially prepared to give this child all that he may require medically or otherwise. I need to think about the hopes and dreams and plans my husband and I had for out future post raising children that simply may not happen. I also need to think about the very real possibility of this child not surviving into adulthood or perhaps not even through his first few years of life. I don't want to put my family, myself, or my unborn baby through that kind of pain and suffering. Meg, you are a very good person and I admire the personal choice that you would make in my situation. But, unfortunately, I do not feel the same. To sad. Thank you for your supportive comments. And to anyone else who might have been where I am today, i would love to hear from you. Thanks again.

 

Liz - October 8

I am so sorry.... I don't even know what to say, you must be going through hell right now. Please get a second opinion though. I got my BS in biology and in one of my ethics cla__s we discussed whether or not it was right to even test for downs because you can get a false positive. I tell you this now because you may hear it later and always wonder. Get a second opinion to put your mind at rest and then do what is best for your family. The worst feelings are those of regret and as long as you have done your research you should have more confidence about your decision. Good luck to you, I wish you the best.

 

... - October 8

Is always been this way..Family have kids to fit their needs..In the old time..people have as many kids as possible..Boys to help out the farm, and the girls help cooking and hopefully get marry to a weathy family..That's the poor family ticket to move up a notch..In China..because the single family policy and couple desire a boy more than a girl..Many couple have girl give them up for adoption, or worse yet have abortion in order to have a boy...B is doing what is the best for the family..There is no guaranteer the child will live when it's borned..I did witness a family that have 2 kids and both have DS..I use to work for this couple, whom are very beautiful & good looking..yet their sole daughter have DS...The daughter is very beautiful mind u..but yet the mind is not there..

 

Debi - October 9

B, I'm so sorry that you may be faced with this decision. My husband and I had a major scare a few weeks ago with our pregnancy too. My quad screen came back with a 1:47 chance of Trisomy 18 which is even worse then Downs, the baby, if even born alive does not live past a few days or weeks. We had an amnio done 3 days later. During the waiting time my husband and I talked alot about this and we decided that the best thing that we could do for all of us was to terminate if the amnio came back positive. We had a healthy baby boy 5 years ago and when he was just 5 months old he got meningitis and died. The thought of buring another child was not even an option, not to mention what it did to my oldest daughter who was 5 at the time. I am glad to say that my amnio came back fine and the baby is okay. Don't let anyone shame you into feeling one way or another. I never thought that I would be able to terminate a pregnancy especially after my son died and prior to this pregnancy I m/c, but no one can know what you are going through unless they have been there themselves. I couldn't see bringing a child into the world for a few days only to have them suffer. It is a very personal decision that is between you and your family, no one else. Best of luck to you and your family, I will pray that you have VERY good results, are you going to get the FISH results from the amnio? They come back in like 3 days, it's alot less stressful then waiting the whole 2 weeks for the final amnio results. Again best of luck to you.

 

To B - October 9

There is always adoption. There are lots of families that adopt downs babies that have health problems. My friend just adopted a downs baby from china that had a few health issues. Maybe that could be a better option to consider or look into instead of abortion. Good Luck with your decision and I'll be praying for you.

 

B - October 9

Debi, I'm so sorry about the loss of your child. That just brakes my heart. And thank you for your words of encouragment. I am so happy to hear that you now have a healthy baby. I just can't believe what we are going through. This waiting is the worst. We will get some preliminary amnio results back on thurs. when we meet w/ our Genetics Counselor. But we feel like we already know. They've already warned me that this particular type of heart defect is mostly seen in Downs cases. I want to still be hopeful. But we feel like every time we are we get shot down. This time we feel we need to expect the worst. So, my whole family is just bracing themselves. Except for my little boy who we have not told yet. We did give adoption a thought. But to be honest, I can't do it to this child. I know the types of health and mental challenges it is going to face and it is extensive. I just can't do it. I wouldn't want that life and I don't want it for him. That is just how we feel. Hopefully we will have the quad screen result back as of tues. That will either give us reason to hope, or another reason to be prepared. Thanks to everyone for listening and to those that have been supportive. It truely has been helpful.

 

Kim - October 10

Oh B I sympathize and my heart is breaking for you. What a very difficult situation you are in. Let me just offer that a friend of mine at 5 months tested very highly positive for Downs. She struggled with the same questions and emotions and thoughts that you are. She happens to be a Christian and has incredible faith - finally she landed at, "well, we are hoping for the best and preparing for the worst. we are going to just leave this up to God who loves this baby and trust that He has a plan for this baby whether it is healthy or not healthy." Last week she delivered a perfectly healthy baby, no Downs. A story like that may only complicate things further for you, I realize. I guess as you are considering all of your questions, this may be one to consider as well - what if your baby is fine? Oh that is so hard. I am thinking of you much and hoping for the very best for you. Take good care of yourself...

 

rebecca - October 10

B...We too (my husband and I) had to make this same decision back in dec of 2004. At our first ultrasound (21weeks) the Dr. told us that our baby had major problems and he was very suprised that he had made it this far. He had defects to his heart, lungs and brain. He also had physical defects. Including downs syndrome. My husband and I were devistated...this was our first child. We got a second opinion which unfortunaltely came back the same. In the end we did decide to induce labor. We too felt the same way as yourself. I couldn't bring a child into this already very cruel world as it is with so many complications. We buried our angel Alex one week before our wedding. But I know deep in my heart that he is happy know and not feeling any pain! It took me a very long time to go a whole day without crying. I still cry but not as much. On a happy note God has belssed us with another chance. I found out I am pregnant 2months ago and so far so good.....I go for my sdecond ultrasound this thursday. We are hoping for the best! I know none of us are completely out of the woods because giving birth to a child is such a huge miracle. But I pray every night for myself and every other woman out there that has experienced losing a child that we never have to experience this again adn each and every one of us has a happy and healthy baby!! I wish you the best.....try and stay strong!

 

B - October 10

rebecca. Thanks so much for your response. It is extremely comforting to hear from someone who has lived through something like this.It gives me some hope for the future. I sympathize w/ your painful decision. How strong you must be to be trying again. What type of testing are you going through at this point? Are you considered high risk? Sorry, so many questions.... I don't know if trying again after something like this is something I can endure. If the worst happens I suppose we will seek some counceling. That along w/ time may shed some new light on our feelings. 21 weeks already feels so late in a pregnancy. It must have been awful to be induced. Do you live in the states? I am soo scared as I've heard horror stories about the procedure.However, we are lucky to live amongst some top notch hospitals. (we are from the Northeast.) I wish you all the best w/ your pregnancy. Maybe you can keep me updated. Thank you for sharing w/ me. To Kim. You are absolutely right about being sure. I'm glad it worked out in your friends favor. What a nightmare for her. In my case however, we've already had several signs pointing in the same direction. It started back in my first 6 weeks when my hcg levels were more than doubling every 2 days.(that can be a first sign of Downs) Then there is the CHD that we already know he has. A very small % of children have this w/ out the DS along w/ it. Also, amnios have a 99% rate of accuracy which is why we are anxiously awaiting that result and not really banking on the Quad screen. In any case, if it looks like a duck and quacks like a duck, we are going to confidently a__sume its a duck. I really appreciate all the prayers and hope everyone has been sending to me.

 

Kim - October 10

B, how frightening all this must be for you and your family. I know your choice is very difficult. My best to you and here's to hoping that maybe a miracle is in the works...

 

Sarah - October 11

I know your heart and head will be racing to two different tempos. I have had to deal with an induction at eighteen weeks and know what kind of emotions you will have to cope with if you choose this option. Although it was not the option for me i to know alot of beautiful downs syndrome children. I feel quality of life is the main factor and i as a person could not bear to submit a child to a harsh world were anything less than perfect it rarely excepted. God grant you with the serenity to accept the things you can not change, the courage to change the things you can and the wisdom to know the difference. Sarah

 

layla - October 12

Do not feel ashamed B if you decide to terminate this pregnancy. If i was in the same situation i wouldnt be able to keep the baby. Simple fact is i dont want to and wouldnt be able to care for a child with such high needs. Its such a huge thing having a baby and when i decide to make that step and start a family i want it to be right, i want it to be perfect, i want a [sorry if this sounds bad] normal baby. I dont want to spend the next twenty or more years of my life with the responsibilty of a disabled person.Selfish as it may sound yes but i only have one life and i want to be a good mum to a normal healthy baby. Do what YOU wnat to do.Theres no right or wrong answer. I wish you all the luck in the world.

 

lucy - October 12

i'm sure i'm heartless but i think i would terminate.

 

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