"You get what you pay for, but I just had no intention of living this way." -Counting Crows

Why We're Here...

My husband David and I delivered a stillborn Baby Boy that we loved, and wanted. Our first and only son, Logan, had Down Syndrome. Our daughter's smile is a little light in the darkness. She turned one year old three days after our sweet Logan tip-toed away on January 24, 2009. After 2 1/2 years we found out we were having another baby, whom we affectionatly called Rudy. Just shy of 6 weeks we found out Rudy was Ectopic. Rudy was surgically removed on May 26, 2011 delivering another blow to our already broken hearts.


What are your plans for Logan's remains?

Ter asked me this question, so I thought I would publicly answer it.

My husband and I thought it was very important to have an autopsy on Logan since there was no warning that there was a problem until he was already dead. We were advised by the Diagnostician to have Logan sent to University of Michigan to have a complete autopsy done sine the one the hospital does is on the brain, and not the whole body. But, to do this we had to just accept the terms laid down by UofM. If we wanted UofM to do the autopsy we would not get his body back. He would be cremated in a mass cremation with other babies, and his ashes would be placed in a vault with other babies in a plot that UofM had commissioned at a memorial garden nearby. At the time nothing else mattered but to know why he died. We needed to know if it was something that could or would show up in my daughter. If it was likely to happen to the next baby. If it was genetic, hereditary, cultural. We both were desperate for answers. Though I am horribly bothered by the fact that my son will be cremated (the whole burning thing wrecks havoc on my mind) and I am bothered that I don't have control over where he is or will be. I try to find peace in knowing that he is with other babies in the same situation. I have to be honest in admitting that it does bother me. But I really felt like we needed to know, and never in my wildest dreams did I think it would be something as "simple" as Down Syndrome (which was discovered through the amnio the day I gave birth). Though, we were told that Logan did not die from DS itself but rather a complication due to DS, and most likely a heart condition. We do still want to know every possible fact. I don't regret my decision. I just wish I could have had it both ways, the autopsy and his body. I would have liked to have chosen his resting place. We were told that it would be several months before the autopsy results would be ready, so I assume he is still at UofM (2 months later). Either way though, Logan would have been cremated if he would have had an autopsy. And we needed an autopsy. But, the hospital would have at least given his body back...though with out as thorough of an autopsy. We will be attending a memorial service put on by UofM later this year.

20 comments:

Mrs. Spit said...

I'm sorry, that's hard.

Living With Loss said...

I cannot imagine how difficult this must be for you. I hope the autopsy can give you some answers. So sorry that they wouldn't let you have his body back.

Sending ((((((((hugs))))))))

Ter said...

I don't understand exactly why you they won't allow you him back. I understand your decision though, I do... and actually, that's what we did at first (or, my husband rather, I was in no shape to decide, and for the first two weeks after my daughter died, we fought because I wanted my baby back home and he did not want to call funeral homes, etc. but in the end he did, thankfully!)

We had an autopsy done too, but we know that she died because of me, my body, because of pre-eclampsia. There was nothing else wrong with her, and for that, I'm sad and guilty.

You should look further into this before the autopsy is finalized (when we had our daughter we had 6 weeks to make a decision if we decided against the hospital crypt, before they would cremate her) to find out if that is really true, or if that is just something they told you as grief struck parents. Sometimes, hospital staff don't really know what to say so they say things like that because they think the parents would "feel better" to know that everything has been taken care of. It's kind of old school. But it might be worth looking at. I don't know. You live in a different city / country than me (I'm in Canada) so the rules may be different but he is still your child, so I would encourage you to look into it further just to be sure, before anything happens if it hasn't already.

Also I should tell you that even though we did not put our daughter in the crypt, we went to the memorial service that fall, and I'm glad we did. It was beautiful, and it brought some peace, and I hope it does for you too. :)

I should also tell you that I don't see anything wrong in your decision, but I just want you to make sure you don't have any regrets that you didn't look into it. And maybe you have already, so then my rambling is pointless, and that's okay too.

Take care.

Barbara said...

I think you made the most incredibly brave decision and I'm sure Logan was and is treated with respect and gentleness.

xxx

angie said...

ugh...it is just not right to see autopsy and Logan in the same sentence, and yet...your decision ultimately could help so many people. that is how i decided to autopsy Lucy, but thinking the results maybe someday might help a researcher somewhere put two and two together and figure out why this happens to some babies. much love, angie

"numb_was_better" said...

It's amazing the decisions that intsitutions will make for us. I don't even know what else to say right now. It just angers me.

Mary said...

I think you did what was best for you. He will always be with you no matter where you are. I am still conflicted with not doing one. But at the time, I felt it was the right thing. But now I don't know what happened in case we ever decide to try again.

Aunt Becky said...

I would have needed to know, too.

Down's Heart Group said...

Hi, my son died nearly twenty years ago from heart problems associated with his Down's Syndrome - he was fourteen weeks old.

We allowed a postmortem as we felt it might hold answers for us and perhaps help others. In the end it was inconclusive, but I'm glad we did it.

I feel for you that making this decision meant that you couldn't choose what happened to Logan, that must be really tough although I undertand why you made the choice you did. Seems to me there ought to be something done to change that for families in your situation if that is general practice over there.

Anyway, just to say that although we had Daniel cremated and his ashes scattered in the Garden of Rememberance at the crematorium, I've been back a few times over the years and left flowers and poems, but I've never felt he was there. It has always felt that he is here at home with his family and I feel that even if we moved he would come with us - does that make sense?

I don't think it matters where their remains are other than as a place to place tributes etc, whilst they are loved and remembered in your hearts they stay with you wherever you are.

So sad to hear of your loss, hope it helps to know there are others who can feel your pain but that there is life beyond this. Daniel was my second son, after he died we went on to have another son and then a daughter, but he will always be part of our family even though he cannot share it in the same way as the other three.

Penny Green
Down's Heart Group
www.dhg.org.uk

christi.lane@hotmail.com said...

Our hearts go out to you and your family.

Lacey said...

I'm so sorry for your loss. I think you do need answers or you will always be wondering. I would have done the autopsy also. Hugs from Lacey and Jaxson

Little Miss E said...

Heather, I am so, so sorry to hear of your loss. Logan's afghan will be mailed out to you today. I hope it brings you some comfort. While I cannot begin to imagine your pain, I have lost a child with DS through a failed adoption and my heart and soul go out to you. I hope the afghan provides you just a bit of solace.

Lovin Mama said...

I found your blog through the T21 Afgan project. That must have been such a hard decision for you. I am so sorry to hear of your family's loss. You'll be in my prayers.

Nicole M said...

I just wanted to stop by and tell you that I will be praying for you and for your family. I am so very sorry for your loss. Some things don't make sense.

I have a daughter who has Down syndrome that is 9 years old. I lost a baby just after the first trimester right after I had Tarenne. Since then we did go on to have 2 more little girls. I hope that gives you hope.

Much love and many prayers, Nicole

deanie said...

Dear Heather,
We do not know each other, have never seen or spoken or I assume read each others blogs before now. I was emailed info on your family thru "Little Miss E." We are lifting your family in prayer and having been thru many loses in my and my children's live, we know the depth that loss can bring. A difficult decision and one only you know the complications of making. Our Father loves you and Logan. Logan is now home in God's arms. His little body may be at UofM but that precious soul is looking upon you, from the comfort of Angels, and knows the love you have and the sadness you feel.
Logan will remain a bright spot in the world, a teacher of
information gathered from your decision.
As a mother of 5 sons with Ds, one is mosaic, we have so much to learn.
You are courageous for following this path and sharing with so many.
Blessings Mommy to an Angel,
the Blocks

Jaime said...

Sending you love & hugs.

I'm in Michigan too.

I definitely would have needed to know the whole story, for the same reasons you did.

Take care.

Anne and Whitney: Up, Down and All Around said...

I just read about your family and your heartbreaking loss of baby Logan on the Traveling T21 Afghan blog. I am sitting here crying as I read your blog entries - there are no words to tell you how sorry I am for you, David & Aubrey that you have lost Logan. I will keep you in my thoughts and prayers!

Sincerely,
Laura Byron (mom to Anne, 2 1/2 yrs & Whitney, 7 months - born with Down Syndrome 8-25-08)

Michelle said...

I saw your site linked on CJ's. Thinking of you and sending many prayers up. God bless.

bigben said...

hi,
i am also coming from t21 traveling afghan. für die zukunft wünsche ich kraft, zuversicht und dass ihr euren glauben nicht verliert - welcher auch immer es sein mag! ben.

Anonymous said...

Our son, Will, was born still yesterday at 22 weeks. We also opted to have the autopsy at U of M. I linked to your site from a google search because I couldn't remember the doctor's name and I wanted to look him up. In any case, you should absolutely talk to someone there because we chose to have his ashes returned, which WAS an option--but it could take more than a year. I'm not sure how far along you were or where you live, (We live in the Detroit area) so maybe that is the difference. My OB thought that remains were not returned and was surprised by the form so maybe things have changed in the few months between our sad days. Given the delay though, perhaps you could find someone there that can help you. I'm not sure if I can help but if you think I could, email me at antagostreet @ yahoo . com Remove spaces. Good luck! Jen

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