What to say to friends with a sick baby?

In My Humble Opinion
1

We have friends whose first child was born 3 months ago. We hadn’t heard from them since (they live in a different city), and assumed they were just caught up in their new baby & huge life change.

We found out today from mutual friends that the baby has been diagnosed with Prader Willi Syndrome (PWS is a complex genetic disorder that typically causes low muscle tone, short stature, incomplete sexual development, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity - from this site ).

I am horribly inarticulate when it comes to appropriately handling any type of difficult situation, and I need Dopers’ help. We of course are sending them a card & baby gift, but how do we let them know that we have heard of their situation and that we care and that we’re thinking of them and wishing them all the best?

I don’t want to seem callous but I also don’t want to come across as pitying or patronizing.

Advice please!

2

“We heard about the baby’s illness, and we’re thinking of you and wish you all the best.” sounds pretty good to me. If you say what you mean, you’ll hardly ever stick your foot in your mouth.

It sounds like people with children that have this disorder might welcome any kindness that comes their way. It seems like a difficult thing to deal with, and I’m sure they’ll appreciate a thoughtful word from you, especially if you were particularly close friends.

3

If you don’t feel comfortable directly addressing the baby’s illness, you could just write “We’re thinking of you at this time. Please let us know if there’s anything we can do.”

4

What they said.
Also, maybe along with your baby gift you could send them something for themselves. Spa gift certificate, maybe, or a movie gift certificates, if that’s more their thing. Let them know that you know they are going through a difficult time, but they should try to find a little time for themselves to de-stress. Actually, I guess that’s true for any new parents…

5

All these are good ideas

If it is within your financial capacity, let them know that you can offer some financial support. State an amnount _(its not rude , don’t let them think you can offer $5000 when all you can offer is $100).

Conditions like this can be financial heartbreakers for a family…if you can help at all, let them know…
FML

6

With a kind and caring heart, you almost can’t say the wrong thing. “We’re thinking of you and wishing you all the best” is great. Don’t worry so much about what you say but how you listen. This kind of diagnosis is a shock—everyone expects a perfect baby and this is a death of that dream. Offer an ear, offer what you’ve taken the time to learn—that’s a valuable gift from good friends.

7

There is almost NOTHING that is wrong to say, except saying nothing. My son had a number of conditions and events in the first two weeks of life and almost every day was touch and go if he was going to live. Yes, I had just moved across the country, close to family but away from friends. Still the silence was deafening. (Except for mom and Dad, almost no one came to see me. The three that did have a special place in my heart and I would literally do anything for them.) No one wanted to bother me because they didn’t know how the baby was doing. Didn’t want to “bother us.”

On the other hand… I’m not overly religious, I was raised in a very loose liberal Christian tradition, but thats as far as it goes. A few friends out on the west coast told all my co workers and apparently half a dozen of my former co workers dropped to their knees and started praying hard. I eventually reiceved prayer cards and other things, as these devout Catholic women started some prayer programme (forgive me I am not fluent with the terms) for myself and my baby. All I know is that it did give me a lot of comfort, even though Im not much one for faith. So if faith is your thing, “you and your baby are inmy thoughts and prayers” can be very comforting, even to semi non believers such as myself.

I had My best friend got back from Korea when my son was about 5 months old, she was afraid of what she would see… a sickly thing… nope my son is gorgeous…(was recently on a magazine cover). Medical problems or no, he’s still a baby, and a glorious little human being.

So, to reiterate, and not hijack the OP… keep in contact. Send a gift, offer prayers, help, whatever. If you can come for a visit…do so and find something adorable about the bayy…wow his eyes are just like Daddy’s…or there’s a look full of mischief… or what a little wise man.

8

My friend has a child who suffers from a congenital defect which means that the child will always be in her care. I make a point of calling her every 6 or 8 weeks to get caught up and let her know we’re supporting her. I’ve offered to fly to her home and watch her children if she and her husband ever want to get away for a long weekend but so far she hasn’t taken me up on it.

There’s no recipe for being a good friend. Even if you do occasionally put your foot in your mouth, the best thing you can do is to keep in contact and support her.

9

I second the “let me know if there’s any thing I can do” “thinking of you and hoping things are working out of ok” “can I offer x to help out”

I have a daughter with some challenges and yes the silence can be painful. Just letting me know that you know kinda helps.

10

Short and sweet. Don’t ramble on. Remember not to say the next child or hint at getting a healthier kid in the future. It’s a stupid thing that slips past the lips too many times.

11

I’ve never been in this position, so I may be totally off the mark, but I would imagine that parents of an ill child would like the birth of their child to be celebrated, no matter what the issues are. They’re probably mourning what could have been on some level, but I think if it were me, I would appreciate the “thinking of you” and “what can we do to help” alongside some heartfelt congratulations on the new life and the beautiful child, no matter what huge challenges lie before them.

12

Cook em a few casseroles, to freeze & use when cooking is too much of a hassle for them.

Food is love.

13

It can be tough. Our son didn’t last throught the night after he was born, but it was a lot of ups and downs during the pregnancy as we were looking forward to the birth and then kept getting more bad news. I posted a lot of the story last year.

It looks like the survival rate is high, but I can imagine that the parents must be in a shock. If they didn’t know before the baby was born, I would guess that it would be even more of a shock.

At one stage, we thought that Ian would be able to survive, but potentially have a long-term handicap, which would be the condition which your friends are likely in. Of course, you love your child, but that’s not the future you dream of when you first find out your pregnant.

There is no joy more than having a child, and even if it’s for a brief few hours, like ours, or even if they baby dies before he or she in born, there is a great love, which makes the sadness even more. Babies are cute, and one’s own baby is the cutest thing in the world, and you want to share that with everyone.

Most people feel uncomforable with others’ grief, and are unable to support well. I’d call them and ask how they are doing. And listen. And listen. As others have said, don’t try to help them feel better by suggesting the next one will be better or they can try again.

They may not want to talk about it, but just let them know you are thinking about them.

Also, if you can, ask the normal baby questions. Does he/she look like more like her mother or father?

As others have mentioned, keep up the contact if you can. It’s surprising how soon others move on and assume that since it’s been more than a week that the parents will be all better.

My heart goes out to them.

14

I recently did a course on children with special needs, as part of that course I saw a short video that is shown to parents of Downs Syndromes babies. The video is shown very soon after birth (obviously because Downs is almost always obvious at birth) and is made by parents for parents.

The ONE message that ALL the parents wanted to send to new parents and their friends and family is this; please congratulate us on our new baby!

Your friends NEED the SAME message you would send to anyone with a new baby!

eg: "CONGRATULATIONS ON YOUR NEW BABY BOY/GIRL! I’m sure he/she is gorgeous!

I/we know that you may have some hurdles in your future but we are sending you all our best wishes (and help if you need it).

I/we know you will enjoy your bundle of joy :)"

What struck me most about this video was that parents of a child with ANY disability would not CHANGE their child. They love the child they have and they want the people they care about to acknowledge that.

Just congratulate your friends. They need to know that their child is NOT a tragedy!

15

Yeah, please don’t be afraid to ask about it. On one hand, people who have a sick one at home can get a bit tired of giving the medical report to everybody, but as Mom recently told SiL (whose dad has ALS) “it’s a pain, but I prefer it to people hemming and hawing because they’re afraid to ask” (Dad took three years to die, cancer).

If you can offer a shoulder, do. I find that often that’s all my friends and family want from me - someone to listen going “a-ha” and “oh my” at the right spots.

16

Exactly.

Congratulate your friends. The baby’s medical condition is a footnote. Let them know that you know and offer whatever is in you to offer (from best wishes to monetary help, going by prayer and food). Still, the focus of your first message should be the joy of a new baby. Let them set the tone for the future with their response.

17

One of my best friend’s eldest son has PWS. It is tough, but the thing he always appreciated the most was that I never have treated the boy any differently than the other 2 (who are completely ‘normal’ and healthy).

While the disease can be very tough (and scary as hell, since doctors will tell you that many kids with this disease never live to adulthood), just knowing that you are there to listen and offer an ear is usually all that someone needs.