What should I do/say

[Haleysmom]

My Brother & SIL just found out late yesterday afternoon that the baby boy they are having has DS. This is such a shock. What are the chances of a Brother and Sister BOTH having a child with Trisomy 21. What can I do for them? My heart is breaking for what they are going thru now . They now have to schedule a level II ultrasound, but are so frightened about anything being wrong with him. They adore Haley and I'm sure knowing her has helped them accept this but as we all know thi is devastating to them right now? I don't want to overwhelm them with information, but of course knowing Haley they know there are many health risks associated w/DS . Any suggestions on what I should or should not do? thanks

Sue

[steffipoo]

I guess if I were in your shoes I would just be there for them. Especially at the docs or level 2 ultrasound. You I am sure know the questions to ask that they may be way to overwhelmed to think about? WOW I know of people who have had more than one child with ds but never a bro and sis both having a child with ds. Ask her doc what the likliehood is. I am sure they may be kinda embarassed to be saddened in front of you. Ya know like if they are sad around you they are negating Haleys worth. Let em know its okay to be overwhelmed and sad and that you are NOT offended by this. Ya know that could be an issue that could come between you all. HUGS to your bro and SIL.

[Haleysmom]

I have to add, a few years back (5-7) I was involved with a survey of parents of kids w/DS that knew prenatally (sp) about their babies having DS and a booklet was written. A Light at the End of the Tunnel. I am proud to say - the title is mine ;D and page one parent reference from Susan, Cranston RI is me ;D I've linked below for others. This is so hard for me. I understand their grief totally but I did try to tell them that all will be ok. I have been blessed with wonderful family support from both mine and DH's families. I told my bro and SIL that they too have wonderful family support and there are many services in our area for our kids. Thanks all for any suggestions or even just having this terrific place to write my thoughts and concerns with others who know. Love you all

www.dsaoc.org/prenatal.htm -
You do need adobe to read

Sue

[PaigesMom]

You know Sue, I think you are doing everything you can right now. I can only imagine how hard it must be for you as you know the grieving that initially happens and I'm sure you never wanted your brother to have to go thru it.

I think that initially I would be sort of a "bystander", there to answer question and be supportive, but not offer to much information or do anything that might overwhelm them. You are obviously a wonderful sister and will be a tremendous support system to them.

I am going to read the article you linked - a new parent just contacted me for our local DS group, she just found out in utero that her baby girl has DS and she is devastated, feeling like there is no light at the end of the tunnel. Being there once, we can only offer our support and experiences, but it is really up to them to move thru their feelings together. I am however, going to send this link to them. Thank You!!

Best of luck.

Debbie

[SuziF]

Sue,
Just be there for them. I know that's what I most appreciated, my 2 cousins who were just happy for our daughter's birth & celebrated her like any other new baby in the family. While not as close as yours, I had a cousin who had a daughter with DS.She was about 9yrs younger than me but passed away from surgery complications as a toddler. Also, my BIL has a sister my age with DS.

Congrats on the nephew!
Suzi

[rickismom]

What a lovely booklet! So well done!

Just be there-nd remember to let them feel OK about complaining in your pressence.

[christie]

If it were me I would just let them know I am there for them and any time they have any ?'s just ask and then wait for them to approach you. When I had Christopher 11 years ago my sisters Best Friend's son (DS) was 11 then and she said to me I am here if you need me ;D For me that was the BEST and in my own time I went to her who may I say has become one of my Best resources over the years

Just remember what responses you liked and didn't like when Haley was born and you will know exactly what to do

CC

[MaggiesMom]

The one thing that my mom did for me was start a note book the day that Maggie was born. She wrote down everything that the doctor's said, appointments, schedules, questions for me to ask them later...again and again since I couldn't keep it all straight in my mind, or understand what they were saying!

It really helped me and I look back at it now and know that it was a really TOUGH time for all of us...we almost lost Maggie at birth due to her heart issues. So it was great to have that to fall back on.

Other than that, I agree with others...tell them it's okay, you understand their feelings and they can come to you anytime they have a question or need support. I do think it will be better if they come to you on their terms.

I would offer to do things like go to doctor's visits or other things that you know from experience they may need help with. But, I'm sure it will all have to be done delicately.

We'll be praying for all of you.

Robin M - Maggie's mom