Thursday, 1 October 2015

Support and awareness for the month of October

I just want to slightly divert away from Sebastian's story for one post and help to raise awareness for two things close to my heart. You see, October is Pregnancy and Infant Loss Awareness month, with Pregnancy and infant loss remembrance day being on the 15th October. However, this month is also National Dwarfism Awareness month - what are the chances that both are relevant to Sebastian!? 

In honour of this month, I want to share a couple of things with you about both pregnancy loss and dwarfism, my aim of doing this is so we can better support parents and ensure they never feel alone.


Firstly, I have been asked a few times (and it's only been 6 weeks so far), what friends and family can do to help someone they love whose child has grown wings. Now I'm not an expert on this at all, but I can talk from my own experience so far. If I think of more as time goes by, I will add them in the comments section. I encourage you to do the same if you can think of something that has helped you or someone else.

Whilst the parents going through the loss do not see themselves or their baby as another statistic. The sad truth is that 1in 4 pregnancies end in miscarriage or still birth. Specifically, in Australia, over 150 000 parents lose a baby during pregnancy each year. That Is a huge number of women walking around with this grief and I have made it my own personal goal to help as many of these mums and dads as I can. Here is how you can also help:

Things you can do right now:

1) If you want to ensure a mum similar to what I went through has a bear to hold as she leave the hospital as well as knowledge of local support groups and services: click HERE (this will also keep Sebastian's name alive).

2) If you would like to donate a wedding or formal dress, or money, so that a baby has something to wear to their funeral, click HERE (Angel Gowns were so quick to provide me with a gown for Sebastian, I had it within 12 hours of informing them and it was perfectly made. It saved us the stress of finding something perfect for him to wear )

3) you can light a candle on October 15 to remember Sebastian and a the other babies taken to soon. This is the official Remembrance Day for all babies lost during pregnancy. I would love to see photos of your candle lit. 

4) If you would like to further raise awareness for pregnancy and infant loss, consider turning your display picture pink and blue with this link on fb : 

When someone you know has lost a baby / child:

Whilst there is nothing anyone can say or do that will take away the pain, there are always going to be awkward things that will get said accidentally and no matter what you do, the mother and father will still be sad... But if you can put a smile on their face for the briefest second, than it is worth it. Consider doing the following:

- Be there to support the family, send them a meaningful card or message. Be available to listen without judgement. Help them find answers if they are searching (whether spiritually, through religion, or scientifically). My mum sent me the most beautiful text message that helped me accept what happened to Sebastian, I will never forget it. 

- Refer to their baby by name. Nothing upsets me more than someone (mostly medical staff) calling Sebastian a "foetus". Their baby died and no matter the age of the baby, they are a mother and father.
- Don't be afraid to talk about their baby (you will have to gauge the parents on this), but just like any mother most will want to talk about their child they are so proud of. Don't be afraid that you will upset the mum by raising the topic, it does hurt, but we love hearing that other people haven't forgotten about them, even years down the track.

- Make sure the dad is ok. They grieve too, albeit differently, but they still grieve. Most men I spoke to whom are in the same position as James have returned to normal routine ASAP. And that is ok. Usually at home they are trying to be strong and keep the household together while the mum can't bring herself to get out of bed. Ensure he has opportunity to talk to others; find him a contact number for grieving dads, hang out with the kids or the mum for a bit so he can have a beer at the pub. And make sure you ask him if he is ok. He will say yes, but he won't be. There is a great book called "Stronger and Tender" it is only short, but has some great explanations and ideas on what Dad's can do during the grieving process. It has actual hands-on ideas, like building a memory box for the child's belonging etc. I think most men would find it useful (if they like reading) and I think women can learn from it also.
- Be available to listen to the Mum and Dad. Everyone grieves differently and at that stage they don't need anyone judging them, their thoughts or their actions. So long as they are being safe, support them in what ever they need to do to get through the day. If they don't want to talk, sit and cry with them, hug them- Whatever will help them. If they don't want to see anyone (highly likely), give them space. Consider screening calls for them and keep family and friends updated on how they are doing. Trust me, they will receive lots of messages and calls in the first few weeks from all sorts of people - friends, family, colleagues, medical staff, social workers and even strangers who hear the news. Making small talk is the last thing they want to do and most phone calls will end in awkward silence or the deafening noise of the mum sobbing and unable to say anything. If you call, be prepared for this. Please note, we know that you are just trying to help, and a phone call is definitely a nice gesture. Speak to people close to them and see whether a call is better, or a message.

- It's ok to send flowers, but be aware they die. I was fine with this and loved the sentiment ( we had 11 bouquets all up!). Others may not like the idea that they die. 

- Try to give a gift that honours the memory of the baby - my favourites that I received included: a nice frame with baby's  birth details inside, an engraved love heart necklace with baby's name, an engraved box for birth certificate, a crochet blanket with baby's name on it, a teddy to take to the hospital - the baby may be buried with it, or it may be nice for the mum to cuddle it as she leaves the hospital empty handed, a baby book so all birth info can be recorded nicely. A photo album, outfit for baby to be buried in, a plant that flowers on their birthday month (we were given a dwarf peach tree, it was unplanned the type - but we thought it was perfect for our little boy who had a severe form of dwarfism; it will flower each year in August around his birthday).

- Depending on when the baby dies, be sure to congratulate the parents on having a boy/girl. We received a "it's a boy" balloon and it was nice to have some positivity around the birth of our sleeping angel. We also had some friends congratulate us on delivering him and being proud parents.
- Cook  and deliver meals that can be frozen- chances are the parents aren't going to be eating, they definitely won't feel like cooking

- If going to visit or being nearby, stop off and get some groceries for them - they won't want to be going to the shops for eggs, milk, bread, coffee, etc., so consider doing that for them. If they have pets or other kids, also get some food for them - maybe a treat to keep them happy.

- Offer to take other kids out for a while. They probably won't understand what is going on or why mum and dad are crying so much. This provides respite to both the child and parents (I know we don't have other children, but it is something that other mum's have been grateful for).
- Be prepared to drop things off at the door and leave. Don't expect to be invited in or to see/talk to them. Don't make them feel guilty for it either.

- Help organise anything for funeral - balloon release, paper boat release, matching ribbons for everyone to wear, outfit for baby (see angel gowns below), outfit for parents. You can read my posts about Sebastian's funeral to get an idea of what some people did for us.

- Support the family to write their feelings down, write a letter to the baby etc. We found this very useful in our situation and then used the letter at Sebastian's funeral.
- Help find the parents a support group in their area. The hospitals social worker can probably help with this. alternatively, I have put a link below to Bears of Hope. There are a lot of Facebook support groups too.

- In weeks and months down the track, ask the parents how they are going, and still be available to listen. Still talk about the baby.
- Refer to relevant family members as 'grandparents', 'aunts' and 'uncles'  and ensure they have support to - they don't want to lose this baby  from their family either and they definitely don't want to see their son/daughter/sister/brother  in this pain. Everyone will be hurting and feeling helpless.

- Remember the baby's birthday and help the parents celebrate it each year.

- Do what you can to help remember the baby also. We have had people light candles for Sebastian at church, build a garden at their house with a little rabbit statue in it, have something symbolic tattooed on them for Sebastian (it does not have to be drastic, but something sweet and small depending on your relationship with the parents).

- Organise a service to do things at the hospital - get foot prints, photography by professional, moulds of feet and hands, a blessing from a priest etc.

- Don't expect to be shown a picture of the baby and don't treat the photo as if it is anything other than a new born baby. Comment on facial features that are similar to the parents and how precious and peaceful the baby looks.

- Don't say unhelpful things like "you can just have another" or "youll get over this" - we don't want to get over this, we want to "learn to cope better" and "find ways to remember him that will make you smile" - for instance seeing a rabbit makes me smile. Another thing that is nice to hear (for parents who are planning on trying for another baby) is talking about how their angel baby will help choose a perfect sibling (or rainbow baby) for them. Encourage the parents to ask their angel baby to send a sibling when they feel both the angel and parents are ready.

- Don't tell them to get over it, no matter how long it has been, it will always hurt.

- Subtly protect them from pregnancy announcements, births of healthy babies, pregnant women etc. If you post a lot of photos about babies, have them minimised or limit who can see them. If an event is coming up and a pregnant lady will be there, warn them.  Everyone is triggered by different things and some people may be ok with these situations.

- Go wth the mum to future appointments at the hospital etc. or if she has to visit someone in the same hospital or a similar ward. You may not be needed if the husband is attending also.

- Ask if they would like you to inform work etc, so they don't have to worry about people asking how the pregnancy is going. This is something they will be worried about if everyone knows they are pregnant.

- Support them to return baby items to the store if they wish (items can be returned outside of policy if the baby has died) 

- If the baby is not eligible for birth certificate, help them get a recognition of life certificate from a charity listed within this post.

- Find physical things that can be a reminder in the baby's home - in addition the items I have already wrote about,  my aunty bought me a glass heart with a poem about my son's smile; my mum bought me a little rabbit statue for Sebastian's shelf.

Other volunteer organisations include:
- Heartfelt Photography - we did not use this organisation, however I have heard amazing things about them.
- SANDS - They provide free counselling services to both parents and have a lot of resources for Dads!
- Bears of Hope - Simply an amazing organisation who do a lot of different things to support parents who have lost a baby.
- Angel Gowns - they will provide urgent clothes for a baby who has nothing to wear at the funeral etc. The gowns are hand made from donated wedding dresses. They are perfect and have a high turn around. They also do a lot of awareness.

If you can think of more useful things, please consider writing them in the comments below. I have also put some books that may be useful for the family's current and future children, here:


Now, I don't have much advice for skeletal dysplasia as my son did not survive it, but I have met a wonderful mum who has three daughters, two with Diastrophic Dysplasia - a form of Skeletal Dysplasia. This Mum has been an amazing support to me and is doing amazing things  to raise awareness about this condition. I know that their type of Skeletal Dysplasia is different (well, there are over 200 different types) however, her daughters survived the odds as they were also diagnosed with having a lethal form of Skeletal Dysplasia when she was pregnant. The girls now live healthy, happy lives. You can find the Facebook page here:  Faith, Hope & Joy - Diastrophic Dysplasia  I encourage you to  like her Facebook page and share her posts for the month of October. 

Type 2 Osteogenesis Imperfecta is what our little boy is thought to have had. If you want to read about and make yourself familiar with the suffering Sebastian endured as well as thousands of other people, you can click on this link Fast Facts - Osteogenesis Imperfecta

Please help with raising awareness by sharing this blog also. I know we can work together as a community and ensure that no mother or father ever feels alone.

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