Sister Expecting

My children do not have Down's however both of my AFP tests came back positive that they both could have it. I followed up with the amnio's to prepare myself in case they did (you know, get a knowledge jumpstart on how life would be). If she is basing her fears off of that test, know it has a HIGH percentage of false positives. I would recomend reading up a little on children with Down's and wait to hear about confirmation. If she's not talking about it, it is because it is a very private and personal issue. One that a lot of people struggle with, options, are there options, what will I do, etc.

Let her come to you, it's hard on the family to let her have her space, but that is what she needs right now. She'll talk about it when she's ready.

-K.

I read this fantastic article one time from a mother with two children, one with downs syndrome, one without. She was saying how much more determined and patient the child with down syndrome was and how the child without would get so much more upset about the silliest things. She was saying how people would always ask "do you worry about your little boy? (the one with downs)" And she would reply honestly...,"no, I actually find myself more worried about the other one..."
I'm sorry that I cannot share your situation, but I have often found that article inspiring as a mother. I believe I read it in an old issue of Parents magazine that was dedicated to children with Downs Syndrome.

Hi J.,

I have no experience in this area. I just read your request and wanted to tell you that I think you are a very wonderful and caring sister. If your sister and her family do have a baby with down syndrome, they will be very lucky to have such wonderful family for support.

K.

My child does not have Down's Syndrome, but he does have a genetic disorder. He has a deletion on chromosome 10. I did not find out about this until after he was born and it was a shock. My son had some serious medical issues which required immediate hospitalization and surgery which was stressful as well. Your sister is at somewhat of an advantage knowing ahead of time. She will be able to find resources and support while she is still expecting and the medical team will be ready when her child is born, just in case there are any immediate medical issues that need to be taken care of.

Your sister may not be talking yet because she is still trying to process the information herself. When she decides to tell you, I know you will be a great support and encouragement for her. In the meantime, you can be researching Down's Syndrome so that you are informed as well. I know that there are alot of support groups out there that she will be able to join, so she can have the support of other families dealing with Down's Syndrome as well.

Just a word of caution when you read medical sites and other things on the Internet. Many will show the worst case scenario and it can be very depressing to realize all that "could" happen. Children with Down's Syndrome, as well as other genetic disorders like my son has, will develop differently. Some will be low functioning and some can be very high functioning -- you find out as your child grows as to what they will be able to accomplish. My advice is to take advantage of all the therapies and resources and give the child the best chance possible!

You might contact Alta Regional Center (Sacramento, CA)or the regional center closest to where you live. They will be able to direct you to a multitude of community resources!

There is a wonderful Down Syndrome support network called the Down Syndrome Association. There is a huge range within the diagnosis of what each individual child may experience. There is also the Warmline Family Resource center for families with children with special needs.

If you're having a hard time taking this news imagine what your sister is feeling. Being her sister doesn't give you the "RIGHT" to know anything she doesn't choose to share with you.

Your sister has some pretty serious issues she's looking at here and some pretty serious options as well as further testing. Maybe she hasn't told you because she's still processing all the information and waiting on more test results.

IF or when she does choose to tell you, be supportive of whatever decisions she has chosen to make. Because while we can all easily SAY "I could handle it no problem" ... until you're actually faced with that situation ... you DON'T know how you'd handle it.

Dear J.,
I do not personally have a child with Down's syndrome, but I know several people who do. I do know that I had a terrible pregnancy with my son. I was in the hospital for most of it on very hard core medications. I didn't know from day to day if either of us would survive or if he would be born with awful defects. Every day I carried him gave me the will to go on and I just wanted to be able to hold him, no matter what.
The people I know with Down's children see them as special blessings. And they wouldn't change a thing even if given the chance. I know a family with two special needs children. They love them just the same as their other kids and are just so thankful to have them. Another little Down's girl I knew was the cutest thing you've ever seen and that girl had personality plus! She was very affectionate and outgoing and felt she fit right in with the rest of the world because that's how her parents raised her. She did have health problems in the very beginning, but she just never let anything slow her down. Another little boy I know is often described as turning the light switch of the sun on for the whole family. He has brightened everyone's lives so much.
All of that said, your sister received news that no mother wants to hear. I think she's not telling people because she doesn't want to deal with their reactions. She and her husband have to deal with their own feelings. It doesn't matter if they are educated or not, this is their baby. They won't know what to expect or how high the hurdles are that they may have to jump until the baby gets here.
She probably just doesn't want to deal with other people's shock or grief or going overboard trying to be what they perceive to be helpful or supportive. You say you are having a hard time taking the news and you want to live around her so you can help her as much as you can. That may be exactly why your sister hasn't told you.
She may be carrying a baby with Down's syndrome. And, if so, she may be able to handle it just fine. You have children, you know yourself that you fell in love with your babies the minute you knew you were carrying them. Let her have that. Let her have her space and her privacy as long as she wants it. If you have been excited for her about this pregnancy, there is no reason for that to change.
I would say I feel badly about it, but that may be exactly what she doesn't want people saying. Instead, I will say that I hope her pregnancy continues without complication and she can look forward to holding her beautiful baby in her arms.
I know you love your sister. I certainly love mine.
If she can be strong right now, so can you. She may be a lot stronger than you think she is.

I wish you all the very best.

J.,
When I was pregnant with my son on the first ultrasound I was told that it was a possibility that he had Downs. He had a spot on his heart and extra fluid between the two parts of his brain. I didn't tell anybody except my mom and sister. Well, my mom told my grandmother and ione day they were visiting my sister and she made a comment about me having a downs baby. Long story short, my sister flew off the handle. I had many follow up appointments and he just developed slower in areas. I did a lot of worrying about it. But... when it came right down to it I would have loved him downs or no downs. It is A LOT to absorb. I did research and did a lot of reading on what to expect etc. What I could do from the get go to help him in any way. Hopefully she will talk to you. I know I had always thought I did something to possibly cause it. Give her time. Pray for her. Drop her a line and ask her how she's doing. If there was only an ultrasound and not amnio tests they are not always right.

M.

Hi there,
you know sometimes the Drs. are wrong! I have a friend who was told she was going to have a child with Downs, she was offered an alternative option to end the pregnancy... and of course she said, "NO way!"
Come to find out when the baby was born , he was a healthy baby boy with no down syndrome!
So sometimes they are not 100% accurate...
Even so, your sister may just need her own time right now to figure out her feelings on this.
All we can do is wait show deep compassion and be supportive of them.
Wishing you success!

Hi J.,

I might be able to explain your sister a little.......

I do not have a child with Down Syndrome, however, when I was pregnant with my youngest, we were told there was a 97% chance that he would be Down Syndrome. After the Amnio, we had to wait 4 weeks for 'things to grow" in their lab before they could give us an accurate "yes" or "no". It was very emotional for me, and I wasn't sure how to handle everything invovled, so I only told my mom.

Your sister is trying to take in one of the hardest "test results" a pregnant mother can go through. It is not easy, and I'm sure each one of us would handle it differently. Normally, I "go to my girlfriends" to talk things out, but not with this.........I needed to internalize first, and deal with it my own way. I went "quiet" for some reason. Maybe it was the shock of everything.

Give your sister some time. She's trying to figure out if she thinks she's a "strong enough" person to even be a mother to a Down Syndrome baby.

Your sister will be just fine. She just needs some emotional healing space.

Many Blessings to your sister.

~N. :o)

Hi J., I am a mother and grandmother, who has a cousin that has Downs Syndrom. He is in his mid 30's,, and has led a full, productive life. My aunt knew she was carrying a Down's baby, she was in her mid 40's, and he was her 7th child. It was hard for her at first, but she had her children to help, and when Doctors suggested they have him institutionalized,she said "NO WAY". My daughter(at age 28) was also told her 3rd child may have Downs,she and her boyfriend went through extensive testing, and the tests came back negative, and she gave birth to a healthy baby boy, now 2 years old. So give your sister some more time, and just be there for her no matter what she decides. Best wishes, CJ

I have my wonderful son Christian who has Downs Syndrome. He just turned 8 years old this past Sunday. He is a very happy boy. Always wants to make people laugh, loves to dance and sing, plays video games, plays on the computer and for the most part is doing really well.

I found out he had Downs when he was born so I didn't get to have the time to prepare myself for it. I will tell you that the delivery will be the hardest part. You're going to be waiting to hear if the baby does have Downs and along with Downs comes problems in most cases. My son had no heart problems thankfully. He just had stomach problems. All in all he had 3 surgeries and was in the hospital for almost three months of the beginning of his life.

I have a friend in New York that has a daughter with heart problems and I feel for her when she tells me that she's got to take her daughter to yet another surgery. She is very strong, but it does wear you down. You feel like you don't know how much more you can take. You don't know how to help. It does take a lot more than raising a "normal" as they call it child.

I just hope that you know family is the best thing for your sister. She is going to need help. Don't let her stress herself out and make sure your get as much information as possible.

If your sister's baby turns out to have Down Syndrome, there is important information she should know about services the State of California has in place. You can get this information now and be ready to help her at the appropriate time. First of all, there are 21 community-based private nonprofit corporations called regional centers that are funded by the State of California to serve individuals with developmental disabilities as required by the Lanterman Developmental Disabilities Act. The Lanterman Act is the part of California law that sets out the rights and responsibilities of persons with developmental disabilities. San Andreas Regional Center serves 4 counties -- Santa Clara, Santa Cruz, San Benito and Monterey. The website is www.SARC.org. If your sister lives in another county, you can go to arcanet.org (Association of Regional Center Agencies website) and get the name and location of the regional center in your sister's area. It is also important to find out about the Early Intervention Services (check the San Andreas website). You can be a good resource and support for your sister. There are lots of support groups to help you. Best wishes to you both. -- B.

Hi J.,

I would be very careful about broaching this. First because false positive tests are not at all uncommon, so in reality it may not be an issue. She may really want to hear your support anyway, but since I don't know her I can't say. If you do talk to her, it would be good to mention the false positive possibility. As a younger sister, I would also add that you sound like a sister many of us would love to have.

Dear J.,

Your sister has “confided” in your mother. Frankly, it sounds like you’re kind of disappointed in your sister’s husband (i.e. “Her husband never went to college so she works”), feel sorry for her and perhaps a bit superior. (i.e. “If it were me I wouldn't mind it at all.”) I can assure you if you learned you would be giving birth to a child that would have a lifetime of challenges, you would mind. This may be why she has not confided in you. No one wants to be pitied, so be careful how you approach the subject when she does tell you.

I don’t mean to be harsh because I’m sure you love your sister, I just want to give you some reflection on how you’ve come across regarding her situation independent of the pregnancy.

Here is a website that will help you understand a little more about Down Syndrome: www.ndss.org

Blessings…….