Trisomy 21

57 Replies
Jenn - November 24

I am so sorry to hear the bad news my heart goes out to you , as alot say its in the end up to you , but I am 36 and had the test done as I knew that if it had ds or onther disorder I needed to abort as it wouldn,t be fair to the child or my family to deal with I know some can do it but its not a easy road for baby or family and with lots of struggle health concerns growing to me our choice is let god take care of the baby and dont feel any guilt as what kind of real life does the baby have honestly . But if you are stonge and willing to give the rest of your life up with lots of work money and heartache they can be loving children but I see the ds adults everyday and i just feel so bad for them as children they are cute loving but they are also very tempered and can be adbusive , I thank my lucky stars i live a normal life . All the best to you .

 

Bridget - November 24

I am 39 and had an amnio to rule out any chromosomal problems, which thanks to God, there were none. My husband and I had decided to terminate if the results showed the baby had DS or any other issues.We had worked in a camp for special needs kids in our early 20's and knew many DS kids and they were some of our favorites, sweet, fun and loving. I later worked with some DS adults that had outlived their families and had been in state hospitals for many years.DS kids are often born with severe, life threatening heart defects and other issues. They often die young.Some are very high functioning and can live almost independently,holding down jobs and having apts.,if your community has such programs, and some are more severely afflicted mentally. All of these factors influenced our decision, some people understood and others acted shocked and dismayed when they asked "What will you do if you find out there is something wrong?" No one can make this choice for you and certainly no one should judge you, but be ready, because they will. My heart goes out to you and anyone else in your shoes, I'm sure you are showing and many people know you are expecting now, this all went through my head, among other things, when I had my amnio and waited for results.I'll be praying for you.

 

B - November 25

I must say, as a person who has just gone through this, it is nice to hear from people who feel similarly to myself. Since we terminated our pregnancy we have gone through soooo many emotions. One being guilt. I guess it's just a natural part of the journey through the greiving process. I am happy to say that neither my husband nor I feel any regret in our decision. We truly believe we did the best possible thing we could have for our child and our family. Thanks to all who have been supportive on this thread. And may you all be successful on your quest for healthy , happy, babies!!!

 

to B - November 25

Yes you were right and very stong and I know you child is in heaven thanking you This world is to hard for us to survie these days , god bless you and may you bring a healthy baby into the world .

 

Hi B - November 27

I am so glad you came back! Let me give you a little background. I have found out that I have a 1:87 chance of having a baby with Downs which is pretty high for my age (33). We had an amnio done 2 weeks ago. We still havent received the results due to the holiday I am guessing. This past Monday, I had my regular monthly visit with the ob/gyn, he had some concerns about the baby's heart rate from my visit the month before, so we did another U\S. We both a__sumed that the irregular heart rate was due to my huge sweet tooth! On Monday we found out that is not the case, it appears the baby has ASD. From what I have read about Down's, this is a common defect of the heart and especially common in Down's babies. I don't believe if I had not read that and mentioned having read it to the doctor he would have told me that he believed the baby had Down's too. I suppose it's some kind of CYA for him since we did not have the results of the amnio. Or he just wanted to wait til he was sure. So even though we do not have the results back from the amnio we are pretty sure that the baby has Down's. My husband and I both agree that I should not carry the baby to term. The ASD looks to be severe and would require hospitalization after birth at the very least, more than likely surgery would be needed. I guess I am telling you ( and the rest of the world this) because I am going through all of the emotions right now. What is making things more complicated for me is that I did not know I was pregnant right away so all of this information has come to me much later in my pregnancy. I am 26 weeks, so my decision to terminate is so much harder especially being familiar with the procedure for this late in pregnancy. I am really just trying to find out all of my options. I know this is the right thing to do, but the method is what I can't get over. I am just a big ball of confusion right now. Your posts do help, I hope that doesn't sound terrible. What I especially liked was the part about spreading the ashes, we hope to go to some of our favorite places in the world and do the same. I was not sure that would be an option after the procedure not knowing, yet, what to expect afterwards. (I haven't spoken to the doctor about that part because it's easier taking this one hurdle at a time.) It has given me great comfort to know that I will be able to do that. Thanks.

 

to last post - November 27

I am preying for you I cant imagine what you feel as I know its much m,ore heartbreaking for you . But I do believe you are making the right choice a sick child is so heart breaking and unfair no baby deserves to be sick and in pain . thats why we let them go to the better place and not be selfish and keep them here . God bless you and I prey that everything you go though you will feel the comfort of knowing you did theee right thing and may you be blessed with a heathly baby when all is settled here hugs to you and your family

 

B - November 27

To "Hi B". Boy, do I feel your pain. Just reading your post makes me feel all the emotions I was going throught at that time all over again. My baby was diagnosed w/ atrial and ventricular septal defect. And w/ out even knowing for sure the amnio results, my dr. pretty much said it was probably DS. Two days later, we found out he was right. I was 21 1/2 weeks along when we terminated. Awful.... They gave me a choice of D&E procedure, or induction. I guess I was right on the line of where i still had a choice. And you may only medically terminate here until 24 weeks. I took the D&E route. The down side of it is you cannot hold or spend time w/ the baby after. They pretty much knock you out and when you wake up, it's over. Which is harder to deal w/ in some respects, easier in others. You need to do what is right for you. Spreading his ashes was a traumatic, yet healing experience for us. And it was, I felt, good for my son. I wanted him to realize that this was a life that was lost. One that mattered to us and one that we are hurting over. Not just one day theirs a baby the next day it's gone. Have you met w/ a genetics councelor yet? They were extremely helpful in our case. And helped us to be at peace w/ our decision given the babies health circ_mstances. It doesn't make it any easier in those first couple of weeks. You have alot of healing to do. Though, I don't think you ever heal completely. Please, if their is ANYTHING I can do for you or questions i can answer, do not hesitate to email me personally. Even if you just need someone to talk to. I am sooo sincerely sorry for what you and your family are going through. Take care. [email protected]

 

bjmom - December 6

My sister-in-law had our niece three years ago. She was born with DS, and a heart defect that required immediate surgery to repair. She is a sweet, beautiful girl, and we love her. I am confused by some of the posts on this thread. For instance, everyone here seems to be saying that termination "is the right thing to do" because the baby has a heart defect, and DS? (am I reading this wrong?) I'm a little surprised. I understand the woman who said that Trisomy 18 would result in death of the baby anyway, but for Trisomy 21, it doesn't appear to be so black-and-white. I am sympathetic to any woman who gets bad news regarding a baby--I'm just a little confused as to the severity of the heart defects, and the "necessity" of termination in this case.

 

to bjmom - December 7

I don't think "necessity" is the issue. It's a matter of choice and looking at what is on the plates of the child and family. No, trisomy 21 is not a death sentence as is trisomy 18. However, anyone who is familiar w/ DS children and the issues that face them and their families, understands and does not underestimate the enormous undertaking it is when you have one. The worry, the stress, - emotional, physical, and financial, etc. The care that's involved indefinitely- even after the pa__sing of the parents. This is all ALOT to consider and ultimately... not for everyone. That is why it is a personal and private decision that only the family can make and for others not to judge. I understand the value and the joy your neice has brought to you and your family. But not everyone in other situations has the means, nor the will to take the same road as your sister-in-law. That is why it is a choice and an extremely difficult one at that.

 

Toni - December 7

I too am faced with the possibility that the fetus I am currently carrying may have DS (we go on Fri for CVS to find out for sure). I have a cousin who is DS and is now in her 30s. When she was young, she was a sweet & beautiful girl too...as she got older, however, she had medical probs and became violet. Although my aunt & uncle tried their best to show her as much love & understanding as they could, it got to the point that she would beat up my aunt and came close to hurting some of her nieces & nephews - ultimately for everyone's safety they had to make the gut-wrenching decision to put her in a home. It is because of my personal experiences that my husband & I decided before I became pregnant to terminate a pregnancy if testing proved it to be DS. I hope the CVS proves my initial screening to be a "false positive" because I really want to be a mom, but, if it does show the fetus to be DS I feel that the best decision for everyone involved would be to terminate the pregnancy and I would not want someone to judge me in a negative way for a very difficult, personal decision.

 

bmom - December 8

are you saying that people with DS might become violent later in life, and this is a good reason to terminate? I was not trying to be "judgmental". All I am saying is that this is a CHOICE: meaning you have more than ONE option. You all seem to be saying that termination is the only "humane" option. I get the feeling that you think people with DS are nothing but a burden and are not worthy of life. If someone ever said to my face that they think my sister-in-law should have terminated my niece because she is not perfect, I would have to knock that person's teeth out. I fully understand the difficulties and hardships involved with having a dependent who is handicapped. I was just trying to point out that choosing to give birth to a baby with DS is not an "inhumane" choice, nor is it "unfair" to other family members. That is all. Please do not insinuate that my niece might be "cute" now, but later in life she will turn into a beast and my brother and sister-in-law will be sorry they had her. That may be your experience, but it is not inevitable.

 

Toni - December 8

Bmom, I was not trying to be offensive to you. I was simply stating that, given my experience with DS (& the fact that I had a brother who died due to complications with a rarer form of Trisomy), I would not want to continue a pregnancy that was proved to be DS (or any other form of trisomy). This is a personal choice. I respect your brother & sister-in-law for making the choice they did. However, I, & several others who have posted on this thread, have decided to make a different choice. It is true that not all DS children have the problems my cousin has. However, I have seen enough to know that I personally would not be able go through what my aunt & uncle (& my parents & family) have gone through. I’m sure your brother & sister-in-law have done plenty of research to prepare them for what may or may not happen in the future…I wish them all the best.

 

My answer - December 9

Well said Toni. It also sounds like you may have a family history of Trisomy issues... has a genetics councelor looked at your family background yet? I always thought Trisomy defects were caused by flukes and were not hereditary, but you sound like you have more than one blood relative that has been affected. I also want to add that we also were in a situation of having to make the decision to carry to term or terminate a DS baby. My daughter was 15 months old when they told us the baby I was carrying had Down's. Fortunately for us, ours turned out to be one of the many false positives that the testing often reports and an amnio ruled out and problems. We would have terminated though... we had already made that decision. Emotionally, mentally, financially... we weren't in a position to even think about raising a special needs child. Everyone needs to make their own decisions in life and we all do the best we can.

 

Christine - December 15

My 21 year old sister learned that she was pregnant with a baby who has down syndrome and could have terminated but choose not to, being unable to take care of the baby herself she asked me to adopt him. Which my husand and I did. He was born and had a very significant heart defect that required surgery when he was 3 days old. After many complications he pa__sed away at almost 10 weeks of age. Those 10 weeks for my family were the most precious and valuable we have ever lived. His spirit was so strong and sweet and he touched so many lives during his breif time on earth. My sister has never regreted her choice and neither have my husband and I and we look forward to hopefully adopting another baby with down syndrome and likely a heart defect and if the outcome is similar that is ok to. Life is about the journey and if I could make a choice to change one thing that we did or my sister did I wouldn't I would do it all over again. It is far better to love and lose than to never love at all.

 

sophiya - December 16

my heart goes to all of you who have to deal with DS. my sis in law is havg a DS child.she cant take care of the child by herself, the family including my ill mum in law is finding it really hard. pls.........anybody who plans to keep DS children ,pls do it only if you can take care of them

 

dionne smith - December 28

i just lot my baby girl on friday, she was 5 months old it didnt matter she was downs syndrome that was never an option, she had two major heart operations and still managed to smile, i have three other children who have fell to pieces because of her death. They are all fit and well and i was only 31 when i gave birth to her! What i am trying to say if you think you can cope with all the heartache that comes with having a child with downs syndrome then go ahead with the pregnancy because in the short time my baby was here she gave us so much happiness.

 

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