preparing older children for new baby's problems?

[tngirl11]

Hi everyone,
I posted once a few weeks ago that I had been told my baby boy, who is due in June, has Dandy Walker Malformation. Since then we've had another detailed u/s and have found out for sure that his hands are deformed. It's not a big deal in an of itself, but I've been thinking that I should say something to my older kids (who are six, six, and four) so that they will be prepared to see that. Do you think that's true? I'm thinking it would be better to mention it now in case it might scare them to just be surprised after the birth.
The baby may also have other issues when he's born, but we really have no idea what the extent of those will be. I really don't think the doctors have any real idea either, and I'm praying that his problems will be very limited, but the doctors seem determined to keep reminding us about the "worst case scenarios" (he might have some major underlying syndrome or chromosomal abnormality that will cause serious problems that we can't see now).
So I've been wondering also if I need to say anything else to my kids about those possibilities. I'm leaning toward not saying anything since there are no "definites" at all (other than his hands).
What do you think?

[Lindsay1234]

Wow! Lots of kids! Congrats on the new little one! Even with crazy news, its still so exciting to know there is another little one coming! ( I love, love love babies)

My dd2 doesnt have deformations but a heart defect dx prenatally and we had to prepare our 7yr old dd for what was going to happen after the birth. (surgeries, NICU, etc)

My dh and I researched info and pictures of everything (Intubation, IVs, the cribs the babies are in, post-op heart surgery pics, etc) when dd1 was asleep at night so the next day we had a "safe" collection of pictures to show her.

When dd2 was born and we first saw her in the NICU, she was intubated and had IVs and wires everywhere, dd1 saw right past those and said "wow mom, she is so beautiful!" Then post-op heart surgery, dd1 said "Her scar looks just like the pictures!"
I think it was good for us adults too, we had looked at so many, we knew exactly what to expect!

I might not say anything to your lo's just yet. Let them take this all in very slowly.

[starlein26]

There's no right or wrong way to do this, . *You* are processing so much right now. Give it a month or so and see if you feel more ready to discuss things with them. What are the worst case scenarios described by your doctor? Does his brain show signs of hydrocephalus? What type of hand deformity seems to be present?
Best wishes to you!

[tngirl11]

Thanks for the advice ladies!
It's kind of hard to say what the true worst case scenarios would be, but hydrocephalus is at least a possibility, although he doesn't show any signs of it now. I know that with Dandy Walker it can show up after birth. His heart seems to be functioning well, but they said one side "may" be slightly enlarged. It might turn out to be a problem later on or it might not. Also, his kidneys appeared to be slightly enlarged, but they said that could have just been the angle they were looking from--hard to say for sure. It's frustrating to have "problems" that may be serious or may be nothing! We're praying that those things will turn out to be nothing. The hand deformities are also a little hard to see exactly on u/s, but it appears that on one hand some of his fingers are partially fused and that he has one extra finger after the pinkie. The other hand was hard to see because it was curled into a fist. It seems like he may not be able to open it and that it may have some kind of split in the middle. If these problems turn out to be related to some underlying chromosomal abnormality (we decided not to have the amnio, so we won't know for now) or some syndrome, then they said there are all sorts of other mental and physical delays and problems that might show up after birth. Of course, we can't really say anything to the kids about these since we have no idea what they might really be. It's hard to be in limbo like this, but we're hanging in there!
Thanks for listening (reading : )
We have one more detailed u/s at 30 weeks to check on everything, so we should probably wait to talk to the kids until after that. Hopefully no new issues will have crept up, and we will find that the kidneys and heart are healthy.

[2boyzmama]

I think that waiting until the next ultrasound might be a good idea, then you'll have a better idea of what exactly to prepare them for.

But, that said, kids are smart, and hear/see a lot more than you think they do. So if you think there's a chance that they have already picked up on anything, then you need to talk to them about it now, at least in general terms. Otherwise their imaginations may get the better of them, and who knows what they might already be expecting, you know?

Hopefully you can get a better idea of the hand deformities at least, and then ask the dr if there's a term for the type of deformity (I know there is a term that basically means clefting of the hand, which is what it sounds like one hand might have). That way you can look up exact pictures.

[anj_rn]

I assume you will be delivering at or near a children's hospital? If so, most of them have Child Life Specialists. If you call the NICU that your baby might be entering you can ask for the Child Life dept. They specialize in prepping kids to see the NICU and can create pics, books, dolls, etc. When my DD was in the PICU, they even had a mock room set up to show the kids what the room would look like. If you have access, they would probably be a great resource. They would also be there to help after birth. You should definitely prep the kids for a possible NICU stay and what you will be doing.