felicity Posted March 6, 2017 Share Posted March 6, 2017 I don't think I have ever started a topic but I need a place to get advice where I'm at least semi-anonymous. My younger brother's wife is pregnant with twin boys (yay) and they went in for an ultrasound last week. It turns out that one of the boys has spins bifida and the other twin probably has Down's syndrome. They are dealing with the diagnosis of both of their boys and I didn't know what m, if anything I can do to help. They live in another state, about 12 hours from me and I have 4 kids in school so me going there isn't really an option at this time. They have two older children--5 and 3 as well. Twins was a shock to begin with and just when they had come to terms with that, they got all of this news. If you have had family members going through something like this or have gone through thisbyiurself, what would you suggest. My brother knows that I'm available for him any time of day/night if he needs it. Part of me wants to be helpful and then there's another part that wants to make sure what I do is actually helpful, if that makes sense. I haven't done anything but send my brother a text saying that I love them all so far. It just doesn't seem like enough. Thanks for reading this--I know it's rambly and may not make a lot of sense. 1 Quote Link to comment Share on other sites More sharing options...
gaillardia Posted March 6, 2017 Share Posted March 6, 2017 For starts, if you are close at all to this brother and his wife, call them. That's what I would do. By not calling, it sends a message of isolation, IMHO. You care, so show it by calling. Ask them what they need. Go see them over the weekend by yourself, if they are willing to have you. I'm sure they have a lot to figure out and a lot of testing to yet be done, as well as the long term view. 3 Quote Link to comment Share on other sites More sharing options...
J-rap Posted March 6, 2017 Share Posted March 6, 2017 I had bad news once, and it stunned me so much I couldn't do things I needed to do. That's hard when you have other kids you have to take care of. So, maybe a gift certificate for a dinner out plus a nice card saying you're thinking of them, or a delivery service that brings in a couple meals when they choose to do that, or something along those lines. 8 Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 6, 2017 Share Posted March 6, 2017 I agree, call them. Go visit, if you have that kind of relationship and you trust them to tell you if they need space. Send a gift card for dinner - something the kids will like, too. Delivery, whatever. Maybe even movie tickets, if their kids like movies (are there any good little kid movies out now? I don't even know, so maybe not.) Maybe send a care package of activities to keep the kids busy at appointments or even at home when parents need a break. 2 Quote Link to comment Share on other sites More sharing options...
felicity Posted March 7, 2017 Author Share Posted March 7, 2017 I will call them tomorrow. My brother asked for no calls today--I think they wanted to be alone and deal with it together. I did text him to say I love them all. When I talk to him I'll ask them what hey need and would be helpful. And I'll send them a couple of gift cards or something from Amazon and have it delivered. We'll see each other on April 1st but that's the soonest I can get up there. Good idea for the care packages. The kids will need something when their parents are overwhelmed and need to be alone. It's all so new to everyone that I don't think even they know what they need. I wish we lived closer but itms very unlikely we ever will. Thank you for the advice. I really appreciate it. 3 Quote Link to comment Share on other sites More sharing options...
Noreen Claire Posted March 7, 2017 Share Posted March 7, 2017 Flowers? I always send flowers. Something beautiful, but small, to let them know that you are thinking of them. 1 Quote Link to comment Share on other sites More sharing options...
TABmom Posted March 7, 2017 Share Posted March 7, 2017 I've never been in this situation, but maybe in a care package, include stuff that will occupy the kids- new coloring books, sticker books, paint with water books. Maybe a slinky or silly putty? If you can get there, I would offer to take the kids out so they can be alone- take the kids to a movie or park or something for a few hours. Quote Link to comment Share on other sites More sharing options...
wonderchica Posted March 7, 2017 Share Posted March 7, 2017 Well, first I would say to you, that ultrasounds usually aren't definitive. Certainly not with Downs. The twins may have these things, or they may not. How far along is she? They will have plenty of follow up testing to confirm or rule out both diagnoses. If they get confirmed, definite diagnoses, I would start thinking about the birth. The twin with spina bifida will most likely have a significant NICU stay and surgery. The other baby may or may not. Mom may not deliver at her local hospital if it's small, and they may have a lot of back and forth to specialty hospitals over the rest of the pregnancy and after birth. I would be thinking practically- what restaurants are in the hospital she's delivering at, what restaurants are nearby, gas cards, care for the other children, travel points you could share for a hotel, care package for a long stay- hard candy, travel size items, magazines, puzzle books, pillow, etc. 5 Quote Link to comment Share on other sites More sharing options...
City Mouse Posted March 7, 2017 Share Posted March 7, 2017 I will say that my friend, who was "advanced maternal age" had an ultrasound that suggested Down's syndrome and enlarged kidneys. The amnio came back negative for anything and her child was fine. Aside from that, could you offer to have the kids come visit you for a week or so in the summer or after the babies are born? Quote Link to comment Share on other sites More sharing options...
felicity Posted March 8, 2017 Author Share Posted March 8, 2017 Thank you for everything suggested and the stories. I really appreciate it. I called my brother just to say hi and I'm here for them--he wasn't able to talk and I would imagine will call back in the next few days. He and his wife were dealing with everything and just needed some space. I sent flowers today, or at least ordered them. They will be delivered tomorrow. They will be doing a lot of testing in the months to come. They found the spins bifida last week at her 20 week ultrasound and when they did further testing saw markers that indicated Downs. She will have an MRI tomorrow to get more answers about where in the spine it is. I would assume and hope they'll have more understanding of both twins issues. It's odd, my SIL is 34 I think and knows more about prenatal health than just about anyone I know. They are very lucky--they live in a major city in the western US and she is a pediatric nurse practitioner (with a doctorate in treating CF) at the main children's hospital in their city. Her mom is also a NP but in my state. I'm sure she'll go up to be with them. They are well covered as far as medical care goes, both before and after. I would love to have their older kids here for a bit but they are closer to their Mom's family and their aunt is also a pediatric nurse in their city. (My family are teachers, hers are nurses!) I am creating care kits to send up to them and leave with them in April. Once the shock wears off I'm hoping to talk more with them and see what they need/want so I'm not just forcing stuff on them because I'm so far away and can't be there. Thanks again. I really do appreciate it. 4 Quote Link to comment Share on other sites More sharing options...
kiwik Posted March 11, 2017 Share Posted March 11, 2017 Can all the family put a bit of money in and hire some home help late in the pregnancy and after the birth? Quote Link to comment Share on other sites More sharing options...
Lanny Posted March 11, 2017 Share Posted March 11, 2017 (edited) After I posted my original reply, I noticed this thread began days ago. I hope God and her OB-GYN will help them make the best possible decisions. This is very complex. All you can do, if they ask, is to try to give them whatever they are seeking. Advice, opinion, prayer, etc. We had a situation like that (my Stepson and his wife got horrible news during an Ultrasound where they went to find out the gender of the fetus) but in that case there was only one decision that could be made. This case is far more difficult. Just let them know that if they should want to talk with you, you are there for them, at any time of the day or night. Edited March 11, 2017 by Lanny Quote Link to comment Share on other sites More sharing options...
Guest Posted March 11, 2017 Share Posted March 11, 2017 I would love to have their older kids here for a bit but they are closer to their Mom's family and their aunt is also a pediatric nurse in their city. (My family are teachers, hers are nurses!) . ^^^ So what? ^^^ My advice is not to catastrophize when you speak to them. Affirm ALL of their feelings, even if they are dire, hard to stomach, or strike you as naive...Or anything else. But don't rush to tell them how horrible this is, and how you can't imagine how they'll deal with it, and stay strong! etc. Probably you don't speak that way, but jic. Quote Link to comment Share on other sites More sharing options...
felicity Posted March 11, 2017 Author Share Posted March 11, 2017 ^^^ So what? ^^^ My advice is not to catastrophize when you speak to them. Affirm ALL of their feelings, even if they are dire, hard to stomach, or strike you as naive...Or anything else. But don't rush to tell them how horrible this is, and how you can't imagine how they'll deal with it, and stay strong! etc. Probably you don't speak that way, but jic. Mostly my comment about her family being closer is that I don't know about taking them out of somewhere comfortable to someplace they've never really spent time. My brother and I are close but they don't come visit often--we usually visit them at their house. It's just how things have turned out. I haven't talked to my brother since Tuesday and it was a wide-ranging conversation, from the babies to the race we're running together next month. So I'm trying to keep it somewhat normal while still being supportive. I don't think I've said anything about how horrible things are--I've tried to be very careful with my language. Thank you for the reminder though. 1 Quote Link to comment Share on other sites More sharing options...
felicity Posted March 11, 2017 Author Share Posted March 11, 2017 Can all the family put a bit of money in and hire some home help late in the pregnancy and after the birth? I like that idea. I think I'll talk with my other siblings about that. That's something concrete that I can do that would probably be very helpful. 1 Quote Link to comment Share on other sites More sharing options...
felicity Posted March 11, 2017 Author Share Posted March 11, 2017 After I posted my original reply, I noticed this thread began days ago. I hope God and her OB-GYN will help them make the best possible decisions. This is very complex. All you can do, if they ask, is to try to give them whatever they are seeking. Advice, opinion, prayer, etc. We had a situation like that (my Stepson and his wife got horrible news during an Ultrasound where they went to find out the gender of the fetus) but in that case there was only one decision that could be made. This case is far more difficult. Just let them know that if they should want to talk with you, you are there for them, at any time of the day or night. Thanks, I'm trying. I don't want to bug them with too many texts/calls but I do want them to know how much they are loved. We're praying for them and I know that's no nothing, but it's hard when I want to just rush in and do something. 1 Quote Link to comment Share on other sites More sharing options...
Lanny Posted March 11, 2017 Share Posted March 11, 2017 Thanks, I'm trying. I don't want to bug them with too many texts/calls but I do want them to know how much they are loved. We're praying for them and I know that's no nothing, but it's hard when I want to just rush in and do something. Rush in and do something? I believe the best thing you can do is to help them, if you can, if and when they request your help. In the mean time, pray for them. When our family (Stepson and his wife) had the experience in 2011, it was a horrible blow to them, and not so great for my wife, and my DD and me. They simply need to take one day at a time and try to do the things that are the best for them. Quote Link to comment Share on other sites More sharing options...
Guest Posted March 11, 2017 Share Posted March 11, 2017 Knowing about pregnancy and birth and being cautious doesn't protect you from negative outcomes. Ask me how I know :( I agree totally with giving them a little space, sending along helpful things like meals or gift certificates, and emailing your support for just listening if they need it. Quote Link to comment Share on other sites More sharing options...
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