Advice on what to say to parents of newborn w/ Down's Syndrome

[crazymomof4]

Hi guys!
I need some help here. Not exactly close friends, but aquiantances of ours had a baby born a week ago and she has been diagnosed with Down's Syndrome. This was totally unexpected bc the parents are young (early 30's) and no prenatal testing was done for this. So they have had no time to prepare and are just dealing with the news now. To make matters worse the baby has to have cardiac surgery in a few days.
I want to send a card but I'm not sure what to say. A typical "Congratulations!" card would seem trite and dismissive of the pain they are feeling. But, on the other hand, I don't want to have it sound like a sympathy card bc. this baby, like all others, is a gift to be cherished.
I would appreciate any suggestions especially from parents of Down's kids who know what was said at the time that comforted them and what hurt or just plain insulted them.
Thanks in advance!

 

[janette]

I think a congratulations card would be fine. If you aren't comfortable with that maybe a Thinking of you.

I've not been in the situation but I would try to do the same as I'd do for anyone who just had a newborn and treat them the same. The cardiac surgery probably means the baby is in intensive care so you may not can visit them but flowers and something for the baby would be nice.

Check 6_time_momma's website for some information on Down's and it might help you get started.

 

[Saphire]

I would send a regular baby congratulations card. I wouldn't say anything in it about the baby not being all they may have expected. They alone will deal with that and other people should not presume how they feel. A new baby came into the world, their baby, and that alone merits congratulations. Good for you for wanting to do the right thing.

 

[Tiiiigergirl]

I would write a hand written note that said congratulations and then something like what you originally said. All babies are a gift to be cherished and then offer to help in any way possible.

 

[jamsmom]

I, too, would send a congratulations card.

 

[browneyes]

I also think a Congratulatory card would be the ideal card to send.

 

[phamton]

I have a friend who gave birth to a Downs baby when she was 29 years old. She and her husband had no warning either. Of course it was a difficult time for them and their other 3 children. But what she said was the hardest part was how others reacted. The cards she received were not congratulatory cards but sympathy. She wanted to rejoice in the birth of a new child but reality kept slapping them in the face. She was planning on naming the child after her father, a highly educated man who was also the superintendant of the school district. Someone mentioned that she wait until she had a "normal" child and name it after the grandfather then. Luckily, her father said it would be an honor to have his precious grandson named after him.

When she had her other 3 kids, people had come to the house to see her babies. Very few people came to her house after she had the Downs child and when they did it was just to bring food (like a funeral.) No one asked to see the new baby. Then when she went to church, she waited for someone, anyone to ask to see her baby or to hold him (like everyone did with her other children.) All she wanted was for someone to coo over her baby and say, "Oh what a darling baby!" It never happened.

So my advice: let them know that you are rejoicing in the birth of their new baby.

Bev

 

[house_of_princesses]

My DF and her DH were blessed with the most beautiful little girl! She, too, has Down's. I brought dinner and gifts, held her for a few hours, (until my DH took her from me ) and basically rejoiced! Send a new baby card with your love, tell them you want to see the baby when it's convenient and ok health wise for the family! Genuine love and acceptance at this time can only bring smiles and gratitude.

 

[mamajoan]

You are sweet to be concerned about your friends feelings and worries.. Congratulate them all! I truly-truly believe that God Blesses families with Downs babies as he knows that they need that child for what ever reason.. JMHO.. Your friend wil have lots of joy from this baby! A Congratulations Card, A hug, A smile, some flowers, dinner, and a baby gift will all be welcomed by this family.

 

[jfulcer]

My boss and his wife just had a baby with Downs. They did not know ahead of time that the baby had Downs.

I had many of my coworkers come to me for advice as to how to respond to situation. I told them exactly what you have heard here - that their baby girl Emma is a precious gift for God and a reason for celebration.

Of course, past the initial congratulations, we've had conversations about the health issues, but I've always let him bring it up and have not been pushy. If there is something the parents want to share with you, they will.

 

[Leota]

Definately send a congratulations card, like you would for any wonderful new baby.
There is a really neat story our pediatrician told us when Max was diagnosed (not Down's , different challenge) I think 6 Time Momma has it posted at her website - It is very beautiful & well worth looking the site up just to read that...... I can't tell it as good as the original, so I won't even try - But the idea is, how beautiful all our children, some are different & all have different challenges & gifts - But they are all precious.

 

[kdibattista]

I can assure you that a card of Congratulations is just what they need. My sister has Downs syndrome and when she was born 19 years ago, people did not know how to react. Family members & friends told my mom "they were sorry". Sorry for what? She was a beautiful, wonderful bundle of joy. All parents want is for their children to be accepted and treated as any of child would be.

 

[CRB#33]

Anything but a congratulations card might be an insult. Just put a note inside that you are thinking of them.

 

[6_Time_Momma]

I can only echo what everyone hear has said!!

Honestly when my son was born, the one thing I remember to this day is the one doctor who simply said "Congratulations. You have a beautiful son."

That put everything in perspective. It helped me realize I still had a baby to love. It helped to know that someone else saw it for the joy rather than sympathy. So many others acted as though my son had died. "I'm so sorry" etc. It was a birth and I would simply say Congratulations.

 

[Spirit Feather]

Please just treat it like you would any other birth--a reason to celebrate!

We have a 5 y/o Downs girl in my after school group. She is smart, funny and better behaved then a lot of the other 5 y/os.

There are a couple of 4th and 5th grade boys in my group that are always causing problems and always in big trouble. They will sit and play with this girl, read to her, color with her, help her with her snack. They watch her on the playground. It is incredible the gift that she has brought us! She really brings out the best in these boys.

 

[Serena]

Congratulations!!

 

[Ilove8Trax]

Originally posted by phamton
I have a friend who gave birth to a Downs baby when she was 29 years old. She and her husband had no warning either. But what she said was the hardest part was how others reacted. The cards she received were not congratulatory cards but sympathy. She wanted to rejoice in the birth of a new child but reality kept slapping them in the face.

All she wanted was for someone to coo over her baby and say, "Oh what a darling baby!" It never happened.

So my advice: let them know that you are rejoicing in the birth of their new baby.

Bev

Sad story...unfortunatly, many people do not know how to deal with this sort of situation. But good advice, and a good example to go on. I would also say Congrats. The thing is, the parents will deal with it how they do. Some are devestated, while others feel blessed.

 

[Tess]

God only blesses the exceptional with exceptional children! Only a congratulations card will do--they are welcoming a much loved addition to their home and it needs to be celebrated!

If you feel you must say something else--why not a simple wish for a speedy recovery post-operatively.

 

[Shannon G]

Like everyone else has said, I would send a Congratulations card, and maybe include a little note for them to let you know if they need anything. A very close friend of mine has a 3 1/2 year old son with Downs Syndrome, and, like your friends' situation, it was a surprise. She had been through the screenings while pregnant, but it was not detected. This is likely to be a time of very mixed emotions for your friends - they certainly love their child, yet it is normal and expected to also experience grief and anger over their child's problems. I would focus on the positive, and let them know that their child is welcomed and loved, as you would with any newborn.

As far as the heart surgery, this is also common for children with Downs syndrome. They are often born with heart defects. Interestly enough, my friend commented once that the physical issues are much harder to deal with than the cognitive problems. Her son had open heart surgery when he was 11 weeks old, and, looking back, she says she doesn't even know how they got through that - it's like a fog. When their child goes in for surgery, send a get well card.

If they want to talk, be there for them, willing to listen.
This may also be different for you because they are more of acquaintances than close friends, but what I found worked with my friend was, if I had a question about Downs, simply ask them. Obviously, you want to be careful, and don't ask things that are really none of your business, but if you don't understand Downs, ask. I think my friend would much prefer that someone ask her to explain Downs than to make snap judgements about her son and his abilities based on preconceived notions.

I guess the bottomline is, don't ignore that the child has Downs Syndrome, but don't act as though Downs Syndrome defines who that child is either. I think that to ignore is insulting - pretending it isn't there doesn't help expand anyone's understanding of people who are different than the "norm." However, there is, and will be, a lot more to this child than Downs Syndrome. She will grow and develop her own personality, and have her own experiences and feelings, just like any other child.

 

[Talking Hands]

Congratulations of course. Downs babies are some of the most precious in the world.
A resource for them would be a group called Up with Downs. The woman in charge is absolutely wonderful as is he husband. He is my daughters' pediatrician and even now they refuse to leave him.