HLHS Baby Shower

kmanning375

Hi Mommies and Mommies to be!  Next month I will be co-hosting a baby shower for one of my best friends.  She has recently discovered that her unborn son has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and their whole family has a very tough road ahead.  While we're planning on doing a more traditional shower, I was looking for ideas on how I can make the shower a little special to account for his condition.  Could you please share ideas you may have?  Thank you in advance for all of your help!

NoSugarCoating

Why bring the baby's condition into it? Mom-to-be would probably be happier to have a few hours where she's not constantly thinking about it.

Designermomma

Other than giving them a hospital survivor kit and making a bunch of frozen meals, which would be nice for any expectant parent, I wouldn't call attention to his condition.

Sassenach1743

I agree with previous posters, no need to bring attention to this condition at the shower. Give her a break from it by providing a lovely party in HER honor to welcome her into motherhood, just like any other mother-to-be.

Disneygeek77

No no no no no.  I had a baby with three heart defects and I would have been mortified if someone did this to me.  I implore you not to do this.  Trust me, all she wants right now is some normalcy and not draw attention to his heart condition.  

ChiccoBeanz

Clarifying questions: Is this something she explicitly said she wanted shared with guests? Is this shower a surprise? I think that if the answer to my 1st question is a no, you should listen to the PPs. If my answer to question 2. Is a no, you can ask what idea she has. If on the other hand she wants to share this info, then, look up a charity that works with babies with the same defects and maybe have people make small $1-$5 donations. Hope that helps.

cdv2015

My second child was also diagnosed with HLHS among other defects. No matter what, the mother will constantly think of her baby's heart condition at the shower. HLHS is one of the more serious and requires at least 3 open heart surgeries (the first being within the first week) and possibly a transplant later down the road. Would I make the shower all about the diagnosis? No...

I received a handmade baby quilt with hearts all over it, even the stitching had heart designs from a group of ladies. It was so sweet that I never let her use it. I kept it as something she will have forever. Also, monetary donations in an account would be helpful as she will spend weeks - months in the hospital with her baby. Large hospitals often charge parking fees (reduced for parents, but still add up), meals (again, sometimes reduced or given an "allowance" for breastfeeding mothers), bills at home while parents are out of work, etc.

I must add that it is extremely sweet of you to want to give your friend an experience she will treasure forever.

mytinc

Just now seeing this.  As a mother of an HLHS warrior I agree the shower shouldn't be about the diagnosis.  However, to do something special for the mom outside of the shower, you can look into Sisters by Heart.  They're an organization of support for HLHS families.  You can nominate her for a care package of items that will be useful for their hospital stay as the baby will be in the hospital for weeks after birth.  I didn't find out about the care packages until my son was a few months old, but it looks like such a cute idea.

Also, if the shower hasn't happened yet, you may want to advise guests to avoid newborn clothing as the baby won't be able to wear it in the ICU.  If anything, clothing will need to have side buttons/snaps and without feet to allow for all the wires/IV lines/pulse ox, etc. that will be on the baby.  Hats and socks are good.  Any other clothing should be in a bigger size or it may depress her that it will be wasted and her child won't be able to use it.

VesperLove

I absolutely would not make the shower itself about the condition, but as other posters have said, there are some nice little things that can be done to help with the road ahead. 

Do you know what hospital she is delivering at? Or where any of the necessary procedures will be conducted?

If so, do you know if there is a Starbucks or other coffee shops/cafes in the building? Others within a block or so? Maybe consider asking all the guests to include a gift card to Starbucks (or other close by food/drink places) with their gift so she can avoid the hospital cafeteria for every meal.

My sister's best friend had a daughter in the NICU for six weeks last year after some birthing difficulties. Her friends asked if she needed anything and her response was always 'something other than cafeteria food'. They all started pitching in Starbucks gift cards (the only shop in the hospital or nearby) so she could eat some real food, have a nice coffee, etc. She said it's one thing that got her through all those weeks.

Something like that I think would be appreciated but I wouldn't bring it up in any other way at the shower ... and if you aren't sure if she's even telling everyone about the condition yet, I wouldn't do anything as I don't think it's anyone's place but hers to tell people what is going on. 

Good luck to you!