Help & advice please re losing a baby to Edwards Syndrome, and lots of questions re funeral and things

(10 Posts)
JoyceDivision Tue 24-Sep-13 21:05:14

Hello everyone, I'm posting here on behalf of my friend who very sadly lost her baby boy a few days ago. ( I have just posted this in miscarriage / pregnancy loss but a poster has suggested I try this section)

He was diagnosed with Edwards syndrome, his mum gave birth to him last week and he was tragically stillborn.

It doesn't need to be said how devastated my friend and her husband are, her son was very much wanted and cherished, and very beautiful.

My friend has looked on forums re Edwards syndrome and been fully advised regarding the illness. She has found great comfort hearing of other people who have been through this, and knows that there was never going to be a perfect outcome once they received news from their scans that there were serious issues with their baby.

They have spoken to the bereavement officer at the hospital, and will probably be speaking to a funeral director later this week to arrange a service for their little boy.

But there are lots of things they would love to hear ideas and experiences of to get the service right and say goodbye to him.

What sort of things can they do for a service? They are sure that they only want it to be them there, they want it to be a private event for them to say goodbye. Does it have to be in a church if they want him to be buried? They have been advised there would barely be any ashes if they had him cremated, is rthis true as I think this is upsetting to them as they possibly would have been able to find comfort in saying goodbye by taking his ashes some hwere peaceful. They don"t want the hospital to handle this as they want the event to be personal.

I'm seeing my friend Thursday so I (and I know my friend will be too) for any support, suggestions, help or guidance you can offer.

Thank you, JoyceDivision

I lost DS2 at 22 weeks and was told that cremation was inadvisable as there wouldn't be many ashes.
We had a private burial, just DH and I, with a beautiful graveside service which I found very comforting.

Has the hospital a bereavement specialist? Many do. Usually connected to the pastor or general office functions. This person would be knowledgeable. Also have you tried 'pals' the patient advisory group? They can be very useful in difficult circs.

I'm so sorry for their loss. My prayers are with them at this difficult time.

JoyceDivision Tue 24-Sep-13 22:15:26

thank you for your responses, they are helpful xx

gallicgirl Tue 24-Sep-13 22:18:34

The registrar might be helpful in providing information and links to other organisations who can assist.

MaShappo Wed 25-Sep-13 20:19:15

I lost my son to Edward's Syndrome in November 2010 at 23 weeks. We had the same difficulty deciding what we wanted to do. We changed our mind numerous times as we thought we had made the right choice to be met with a wave of emotion about him and how we wanted to show our love and respect for him. It's not easy.

My only advice is that your friend and her partner need to make decisions that they can live with for a long time and not regret; making the right decisions at that particular time.

We decided to have a cremation and bought his ashes home (we haven't been able to scatter them yet. I can't bear to part with him and want to keep him near the hustle and bustle of family life - but that's another thread!). If they can find somewhere special to bury their child, where they can visit, then I'd advise that they do this. They may not be able to handle the emotions initially, but it will be a comfort later. There's a lot of guilt, sadness and pain to deal with that it's so hard to make a decision that they feel is right at this time.

Noteveryday Wed 25-Sep-13 20:30:53

The following is upsetting so do not read if you are not in a good place - I got to take home ashes. You can ask for the cremation to be done at a time of day when the crematorium is cooler (think its the end of the day). Also due to postmortem / delay etc. we got a fairly thick hefty coffin which I think helped - the ashes were obv mostly of the coffin but its psychological really.
MaShappo my loss was before 2010 and I still have the ashes...in my original plan they were going to be scattered by now but as the baby didn't actually live there were no places special to the baby. Agree burial may be more comforting in these circs as there is somewhere to visit.

Funeral directors often give their services for free but you may have to pay burial fee if you don't want shared grave. Can have the service in the crem and have a humanist celebrant, can have a non-religious burial in town cemetery, they often have a burial area near other babies which can be comforting.

Contact SANDS, on their site there is some useful stuff about burials.

HumphreyCobbler Wed 25-Sep-13 20:40:28

The funeral for our son (born at 21 weeks with Patau's syndrome) was paid for by the hospital. We are in Wales, I don't know if this happens elsewhere. I made a flower arrangement for him from the flowers that people sent us at the time. My DH carried his coffin into the crematorium. It was just us and the lovely, lovely chaplain of the hospital. We were able to collect the ashes, no one ever mentioned this as being a problem.

I am so sorry for your friend's loss. Going through the funeral of your baby is not something any human should have to go through, but I take comfort in the memory of it now. I feel we did our best for him.

MaShappo Fri 27-Sep-13 10:13:24

Yes. I agree with HumphreyCobbler. Make decisions and do things that will be a comfort to you later. It will take an age to deal with this and even then it's almost too painful to think about. Showing the baby respect and love is so important. I too carried the coffin in as I felt that I didn't want a stranger to. It was an instant decision as we weren't expecting to be asked, but it was just something I knew I had to do. I draw enormous comfort from this now as I feel so terrible about what happened that I think he'd forgive us when he can see how much love we showed him afterwards.

We wrote him a note and sent it in with his coffin but have kept the white rose and teddy bear with his ashes. I think in the long term I may have prefered a burial, somewhere to visit, but at the time I couldn't bear the thought of him being out in the cold. Totally irrational, but we had to make decisions for us at that time and it wasn't really a normal time, so I guess we can be excused. I do feel so much for your friend and hope that you can be a comfort and help for her.

JoyceDivision Fri 27-Sep-13 20:59:53

Hello everyone, and thank you ever so much for all your messages.

Mt friend and her dh have spent a lot of time talking and visiting places to consider where to bury their son. It is a decision they feel comfortable with and hopefully will bring them comfort in the future.

Thank you all for your posts, I'm so sorry for all of you who have experienced the loss of your child, and thank you ever so much for sharing your experiences, my friend was greatly comforted to read them rather than having to go through the medical paperwork they are still dealing with, and to have honest, practical advice.

thanks

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