Keepsakes for Parents of Passing Infant

Updated on October 30, 2014
R.B. asks from Decorah, IA
19 answers

my stepdaughter goes in later today to start the induction of her daughter. Through ultrasounds they have diagnosed her little one with pontocerebellar hypoplasia ( rare birth defect where the cerebellum and in her case also the brain stem did not develop) prior to that she was diagnosed with Placental insufficiency ( the placenta's failure to provide enough nutrients) . We will find out what type of pontocerebellar hypoplasia she has... Type 1 or Type 2 after she is here with testings. So far all of the neonatal doctors have told her that no matter the type, she has a severe case of it then to add to because of the placental insufficiency she is only about 3.5lbs right now. They have told us that they obviously can't say how long she will be with us, but they are 90% sure she won't live past a couple of months if that. They have only given her a 1% chance of survival rate.

My cousin is coming in and doing professional pictures right away at the hospital so everything will be captured by film. We have special dresses and blankets made for her. Some to use then keep as keepsakes, some to be buried in if the time comes. ( we are being optimistic that she will one of those 1% survivals... but also being realistic that the odds are against us).

But what else can we do/ get if she doesn't beat the low odds stacked against her so we can all honor her forever? She also has an older sister who is 3.

Or for those that my heart goes out to that have lost a little angel, what do you wish you would have done or gotten?

We wont know until she is here how long we will have with her. They said it could be minutes, hours, days, weeks or hopefully a few months. But I don't want to be down the road and look back and say " I wish I would have...."

Thank you all for any idea's or advice you are willing to share.

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So What Happened?

Thank you so much everyone! It's been a roller coaster of emotions that past couple of months. I know in my heart I should have asked this question sooner but I really didn't want to face it. Well she will be here by tomorrow and there is no getting away from it.

Sue, thank you so much for sharing! I know it couldn't have been easy. From the bottom of my heart I thank you!

They have already talked to their Pastor and he is already at the hospital. They have talked to the Dr's and everyone is on board with no matter what happens she is to be baptism first then the Dr's can do what they need to do. For the cord blood that has to be saved and tested. I guess one of the tests she needs done shows up best from the cord blood.

We have a schedule already made up for who will take care of what and our other granddaughter for the next month so mom and dad can be at the hospital as much as possible. Unfortunately the hospital they have to be at is 2 hours away from home. So there is no quick run home and back trips.

Thank you again for everything it really does mean a lot!
one more thing... if you wouldn't mind keeping us in your prayers that would be greatly appreciated!

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M.S.

answers from Seattle on

My mom lost a little one a few days after she died. I don't remember my sister, I was only 18 months old when she was born. Fortunately, we have some photos, but my mom wishes that she had the foresight get hand and foot prints to remember her daughter by. You can get a special cement like kit at a craft store like Michael's, or you can do it using color paint. The hospital may have something special you can use for situations like this.

I wish you the best, hugs to all of you in this sad situation. I am so sorry.

Blessings to you.

7 moms found this helpful
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P.G.

answers from Dallas on

I don't have personal experience with this, but somehow I came across memorial websites online. I don't know exactly how they work - I think some people just make them to honor and remember their baby. But there may be some thoughts/ideas in them that can inspire you.

I googled to see what might be there, and babycenter.com has an article re. remembering/rememberance - http://www.babycenter.com/0_honoring-a-baby-who-dies-in-p...

Hugs and blessings to you all.

3 moms found this helpful

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S.H.

answers from St. Louis on

okey, dokey...here goes:
our daughter did not survive her 2nd round of heart surgery. As I wrote in her Birth Announcement "for 19 days, we held an Angel on earth".

& that pretty much sums it all up. We considered our time with our daughter a Blessing, an Honor. 21 years later & we still feel the same way. She was full term, a beautiful beautiful baby. Staff came from all over the hospital to see her head full of curls. & yes, the tears are streaming down my cheeks as I type this. The anniversary of her death was just this month.

(sigh) Here's what I appreciated: we live in a small town, with our family still in the Big City. Our wonderful circle of friends here contacted a local florist. Each family sent a single pink rose bouquet in a glass vase.....the same for each family. When I realized what our friends had arranged, I was touched then....& still today. We placed those vases all around our daughter's photograph at the memorial.
& you know what? I still have those vases. One day, I hope my sons will use them somehow in their weddings or special events. :)

We chose "Donation of Body" since organ donations were non-viable. Oh, what a horrible phrase for a gift from the heart. In our case, because our daughter had such a complex dx....we felt it was important for her death to further study...in hopes to save the next infant.
We do not mourn our choice. 21 years later, we still feel Peace. Additionally, we both have chosen cremation for ourselves.

We have photos...a blessed few. I wish we had more. I wish we'd planned for the future. I also wish we'd captured her foot/handprints. But, we were living moment by moment....watching her every breath seemed more important.

At first, I saved everything. Thru the years, I've let go. What used to fill a cedar chest....has dwindled to a suitcase-sized gathering. I have all of the cards, notes, & letters. I also have the Perpetual Mass cards...& they bring me Peace.
A few pieces of clothing. A blanket. 2 dolls/stuffed animals. & the rest is donated or thrown away. Honestly, THINGS have NO meaning....when she never used them. That's a pretty bold statement coming from a packrat like me!

A few years after our daughter died, my Mom gave my Sis/me charm necklaces of our children. I loved that she had an angel charm for my daughter & boy charms for my sons. I still have that necklace hanging in my truck.
But conversely, 2 years ago when my husband/sons gave me a sterling silver MOM medallion....I hate to say it, but I was a little put off that our daughter's name was on it. How twisted is that? I was her Mother, but never got to be her Mom. & it really bugged me.
& the reason I'm telling you this.....is just simply because every parent reacts differently. It's hard to guess/anticipate reactions. I was shocked by my own...to that danged MOM charm! Always wanted one, love getting it...but (smh). Oh, how difficult I can be!

The spring following our daughter's death, we planted a tree in her memory. It died about 10 years later. A hardy, sturdy species & it died.
Soooo, we planted a hydrangea....one of my personal favorites.
Well, it hasn't died....but it's not thriving & has bloomed only once - last year when I said I wanted to rip it out. Again...smh. What the hell?

Soooo, here's my main recommendation: be there to emotionally support your family. Remember the birth AND death date for the rest of your life. Do not forget to mention this child....& accept the tears that will follow.
Everything else is immaterial & not important.
I wish you & your family Peace....Strength....& Fortitude.
& most importantly, I truly believe that once a child is born...mother & child's souls are forever twinned. It's a connection for life...until you are rejoined in death. May Peace be with you.

EDIT: YES, by all means, do a baptism! It brought such Peace to all of us.

14 moms found this helpful

W.W.

answers from Washington DC on

R.,

I had a response all typed up and then BAM!! Mamapedia wouldn't let me post!! I hope I remember it all.

There is one mom on here who can give you personal experience on this. She lost her daughter at 21 days old. I'll shoot her a message and let her know you have this question.

I've had miscarriages, so I've never held my angels in my arms. We had the chance, with Alexis, whom we lost at 22 weeks - but I didn't think I had the mental ability to hold her and lose her. I still regret not being able to kiss her and tell her I loved her.

My girlfriend who lost triplet girls at 30 weeks? She cut locks of their short hair and put them all in one baby coffin and buried them. Unlike your stepdaughter? She delivered and they lived for about 3 to 5 minutes. No pictures were taken.

I'm so sorry your family is going through this. My heart goes out to you and yours.

8 moms found this helpful

F.W.

answers from Danville on

Prayers and healing thoughts to you...this baby...her parents and all who are 'touched' by her life!

((((cyber hugs))))

You have some wonderful suggestions here from some wonderful women.

***a special TY to Sue...for sharing her journey!!
((((for sue...and her daughter))))

5 moms found this helpful

C.V.

answers from Columbia on

I've read up on this due to the experiences of a good friend. The one thing that helps the most (along with the below keepsakes and photos) for parents who experience the death of an infant is to actually name their baby and give them a real funeral service.

So, I would help facilitate this, if at all possible. Often, funeral homes will conduct the service for free or at a very low cost.

I am so, so very sorry that this happened to your daughter and her husband. My condolences.

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C..

answers from Columbia on

I agree with making sure you get hand and foot prints. I would definitely want to have those.

Also - not from a keepsake standpoint.... but from a time with the baby standpoint - can someone arrange for meals, cleaning service, laundry etc? So that Mom & Dad can spend as much time with their daughters as possible?

A woman I worked with had several miscarriages- different, I know but she did the "buy a star" for each. She said was comforted knowing that she could look in the sky and feel like her kids were up there, somewhere concrete.

Are they religious? Do they want to have the baby baptized? You can have a priest come right to the hospital.

Are they considering organ donation? If so, you can express a desire to have your information "open" which would mean that the parents of the children whose lives are saved and/or dramatically impacted by the receipt of organs could have communication with your family. I have heard that can be a huge source of comfort.

Also - she should talk to her Dr about the baby's cord blood. If they bank the cord blood, it can sometimes be used for siblings in case of future need.

I am glad they will get a chance to know their daughter, and build those memories, at least for a little while.

5 moms found this helpful
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S.B.

answers from Dallas on

Sending prayers your way. We went through this four years ago with the loss of our granddaughter after 9 precious days. We knew in advance that she would probably not make it. We connected our kids with a support group for parents who had lost a child or had a stillbirth or a miscarriage before she delivered and they provided some wonderful ideas and still provide ongoing support. I know you said you had a photographer, but there is a special group of photographers that donate their time to photograph babies that are not expected to live. It is called "Now I Lay Me Down To Sleep." - You can look at their website for some suggested poses that your photographer might consider. I would encourage everyone to try to smile in at least some of the pictures. It will be difficult at times, but looking back, those are precious. We photographed our granddaughter with some with a cute stuffed animals in some of the pictures. Some people like to give their baby a bath and dress them in an gown and a special outfit. Some parents regretted not looking at the entire body of the baby or finding out what color eyes they had. We took the clues from the parents as to how much alone time they had with the baby and how much support they needed from us. You have gotten some suggestions on getting hand and foot prints and a locket of hair and those are all treasured memories. You can get a ceramic mold kit and also make a 3 dimensional print. We had a one week birthday party for her and sang Happy Birthday, dressed her in a special outfit, styled her hair and took more pictures. The only thing I wish I had down was to let her see a tree, feel the grass, smell a flower. I will keep you in my prayers.

5 moms found this helpful

K.A.

answers from San Diego on

The photos are a must and I'm glad they have already arranged a professional photographer.
Birthstone jewelry, possibly personalized is a great idea. Something like those mother charms for necklaces as an example. Get a charm to represent both her 3 year old and her new little one.
A nice, large memory box so she has somewhere to put a lock of hair, a special outfit, a hat, cards from well wishers, certificates or paperwork from the hospital and the hospital band and anything else special that they want to keep.
A special stuffed animal for the 3 year old. Everyone is always thinking about mom and how she's going to handle this and secondly they think a little of dad but they always forget to think how the sibling(s) are going to handle this. Take the 3 year old to Build a Bear if you can to make a special "sister bear" so she has something to hold when she thinks of her sister she was getting excited for. Maybe look into a book on loss for the 3 year old as well. That is old enough that she's going to notice and be aware. Even if they don't loose the baby right away or if the baby is one of the lucky 1%, being in the hospital is going to be a scary thing and having that special bear or animal would be great comfort. (EDIT: I saw someone say this might not be a good idea so I wanted to add. This idea/suggestion came directly from someone close to me that lost their little one hours later on the day of birth. That child was their second child. They did take their first born out to Build a Bear to make a special bear to help their child deal with the loss. Many years later that bear is still very special to their older child and was in fact a relief to hold when needed.)

So sorry your family is dealing with this. Peace to you all.

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S.S.

answers from Atlanta on

I'm so sorry. I've never experienced a miscarriage or loss of a child, so I don't have any advice. My heart breaks for those that have lost babies. I just can't imagine the pain.

If it were me? I can only guess at what I would want to do. If the baby lives past delivery, I THINK I'd want pictures, she was alive and I held her. I think I'd want to bury her. I don't know. I have never been in this situation and only know people who have had miscarriages, not lost a baby so soon after birth.

My heart and prayers are with your family.

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M.H.

answers from Dallas on

I'm sorry your family is going through this.

The keepsakes you have planned sound lovely. Because you want to honor the baby, don't be afraid to mention him/her long after she/he passes away. While many people are afraid of mentioning the child for fear of bringing up unwanted memories, most moms that have dealt with a loss appreciate that someone remembers the child with love.

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D.B.

answers from Boston on

I'm so sorry for your family. So much tragedy, so much uncertainty. I had friends go through something similar about 20 years ago (fetal demise), before people really talked about it as much as they do now. They named their baby and had a cemetery burial. My cousin lost twins a few years ago - she went into premature labor, and one was stillborn and the other died within the hour, so she had to do the paperwork for a birth certificate and a death certificate all at the same time for that second baby. They named the first child but the paperwork was different because it was not a live birth. They got good support from the hospital chaplain and decided on cremation. They have still not done anything with the remains but are considering options such as a cemetery plot (they are different religions so that is problematic), scattering the ashes in a favorite location, or buying them and planting a tree on top or next to that place.

I think the idea of a keepsake box is good. There will be things they may want to keep such as the hospital bracelet and the little cap the hospital puts on newborns, and things like a lock of hair as suggested below, as well as the outfit or receiving blankets they had hoped to bring the baby home in.

I would let the parents decide about the birthstone necklace. It may be hard for her to wear 2 charms, one for the 3 year old and 1 for this baby. Of course you don't want to avoid the topic, but having the mom always have to face comments about her 2 charms and then have to explain that one is a tragedy may be more than she wants to deal with. Having the charm in the box might make sense.

The 3 year old is going to be so difficult - I'm sure she's been told that another baby is coming, and now the new explanation will have to be put forth. But expecting a 3 year old to really think about a sister who isn't home or isn't alive, or to understand severe disability and death and grief, is unrealistic. The 3 year old is going to want her normal life and giving her a "big sister" shirt or similar item might not be a good idea until you know more.

There are grief counseling groups and services for these specific tragedies and your stepdaughter & her husband may want to participate early on, or down the road. Options are important because they just don't know what they will need or when.

See what referrals the hospital can give, and connect them with counseling or religious support according to their beliefs and needs.

Blessings to all of you.

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F.B.

answers from New York on

Maybe you can find some peotry or scripture which addresses this death on the heels of birth scenario. It might be nice to have for a birth announcement/ mass card/ memorial service/ death announcement.

Best,
F. B.

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B.C.

answers from Norfolk on

My deepest sympathy to your step daughter.
It seems you/she have thought of everything - more than I would have thought of.
I honestly don't know how I'd feel in her position and I hope I never find out.
I just hope for the least amount of suffering for all involved.
When my grandmother passed away (she'd suffered with mental illness most of her life) at her service the priest said all illness would be lifted/cured - the soul freed from infirmaries of the physical body in heaven.
It was a comforting thought for my mother and those who knew my grandmother.

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R.R.

answers from Minneapolis on

Acknowledge her. Be there for her. Cherish her. Get those footprints. Kiss her. Hug her. Pray for her. Introduce her to her older sister. When/ if she is gone just remember she will be with your daughter always so follow her lead. It sounds like you already are showing your love. Sometimes when things get so painful it is easiest to shut down to avoid the pain. If that is her way, let her be. What is missed most when we lose a loved one is the relationship we didn't get to have with them. God bless you.

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A.V.

answers from Washington DC on

I'm sorry. Something you might do or get the family to do is share a favorite song or book. Then you can read the book later to her sister.

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K.H.

answers from Minneapolis on

oh man-im so sorry you guys have to deal with this-im so sadly sorry for you m your family-i truly wish you the best in this really hard situation.i myself have never encounterd anything like this-but i do wish you godspeed..

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O.O.

answers from Los Angeles on

I'm so sorry. This is tragic.
I was going to suggest some photography, but you've got that covered.
Perhaps something with the baby's name on it? An engraved baby cup or spoon or a small jewelry item with a birthstone of the baby? A tiny baby bracelet or ring that mom could wear as an add on to a necklace?
Something tangible, for the parents to have & hold after she's gone from this world.
Again--so sorry.

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S.T.

answers from Washington DC on

oh, no.
i wish i knew.
i have no ideas, but am so very, very sorry. sending prayers to wrap around you all.
khairete
S.

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