Sunday 6 December 2015

Speaking mixed emotions, thinking confused thoughts

You will probably guess from reading this post that my emotions are all over the place. I'm battling so many emotional wars I'm starting to feel numb. 

2 weeks ago I returned to work. I have to say I work with some amazing people. I was greeted with morning teas, gifts, hugs and lots of support. It made retuning to work a lot easier. I was a nervous wreck as I walked in the door. I had already cried on my way there. 

It is good to be back in a routine and given a distraction each day, but I can't help but feel like I'm back to where I was before Sebastian. It hurts so much to return to reality like nothing happened. I should be going on maternity leave in 1 week. But here I am dreading a client asking me where my pregnant belly has gone or why I am still at work (or where I have been). I will keep going and pushing myself, I haven't yet felt isolated or silenced about what happened, and people are genuinely interested and happy to hear me talk about him so I find this relieving and comforting. I definitely am glad I took the three months off. I needed it. 

I still cry everyday. If you ever wondered if you run out of tears I can confirm that you don't. It's so hard to find things to look forward to, but I pray that one day I will meet Sebastian again and before then I will be able to give him a sibling. Even if it's just one. I will be ever so grateful (and probably incredibly over protective and full of anxiety). 

Anyways, today we had our first appointment with the IVF specialist. 

I had booked the appointment last month after we got our results. We hadn't (and in our minds still have not) committed to this pathway. However we acknowledge that it may be our best chance of getting a baby that is healthy and alive.. So I booked it. 

I had contemplated cancelling it. I find myself second guessing everything lately as I'm so sick of having an uncertain future that is full of "what ifs". We ended up keeping the appointment and were not feeling any emotion towards it other than "meh". It's just another process - well so I keep telling myself. 

We also weren't sure whether it was premature to be going as we were still unsure of when we will get Sebastian's final autopsy results, especially as they said it could be years away... But as we walked out of the house today, totally out of the blue, literally on our way to the IVF clinic, we received an email from the Genetic Counsellor. Our results should be ready by January 11th. Holy crap. This just got real. 

I became a little excited for the IVF appointment after that, so off we went.. 

The doctor was extremely nice. He told it how it was but he was honest. I appreciated that. 

He did some tests (internal ultrasounds & blood tests) and talked us through the cost and process. Steady yourself for that - there is nothing easy about it at all. 

He looked at my ovaries to see whether I have PCOS and endometriosis, which he decided I'm "borderline" for PCOS. I must admit, I became filled with rage when he even contemplated those things wrong with me. I had never felt like anything was wrong with that stuff and I didn't need him throwing another spanner in our works. Nevertheless, I kept it to myself. I'm still unconvinced I am "borderline" . He wants me to lose 5kgs.. Which I feel like if I do before the next appointment, he will be more convinced I don't have it.. Right?

We will be going back to see him on January 28th. By that stage we will have the autopsy results and be able to better plan the process (if we haven't convinced ourselves to try naturally). If everything goes to plan and they find a healthy embryo to transfer first go, I could be pregnant by May 2016. Watch this space? 

So how do I feel? Well to be honest I feel numb. I should be 36 weeks pregnant and I absolutely hate that I am not. I hate that we have to go through with this process and that I have failed in my job of being a woman. 

I am still so incredibly skeptical of the process. I tend to concentrate on the low success rates we  are likely to experience due to having two genetic conditions. I wish I could see just a glimpse of my life in 18 months time, so I can see whether to give up now or not. So whilst I am hopeful, I know that there is a chance it won't work. The doctor said it may take 2-3 attempts to get it right. 

A lady at my work gave me a religious book that the women in her family read after they had experienced a miscarriage or stillbirth. It's a little bit of a family heirloom with a superstitious and religious undertone. I'm reading it. Daily. All the women who used it fell pregnant with healthy babies afterwards. I feel like I have nothing to lose and it helps restore my faith and hope into our future. 



The next few weeks are going to be really hard for us. We have Sebastian's first Christmas in heaven, his due date on January 2nd and then the autopsy results on January 11th, followed by IVF appointment on the 28th. I apologise now-in advance- for any emotional venting that may occur here on my blog, or in person. Feel free to avoid me for the next two months. No offence will be taken.

***

i don't really want to include this in my blog as I don't want financial stress to be something that I write about, but I will put the price below in case you are going through this process and would like to know what the price breakdown of the procedure is (I'm only putting this as I was desperate to find out aswell). But please know this is relative to PGD testing and is the "maximum" amount (it's actually a little more than the below price as you pay for consultations and tests before even getting to IVF). It may differ for you depending on your circumstances and clinic.

This is the price breakdown...

Most expensive case (they have 5 or more embryos to test and get a normal embryo) $20,200 total. But $13096 out of pocket after Medicare (not including consultation fees and tests before). 

If they don't do a transfer because there was no healthy embryo the out of pocket expenses are $10645 ($16165 before Medicare).

If the first cycle is not successful The second attempt (and thereafter) will cost $6739 out of pocket  ($11815 before Medicare). Then on top of that will be $2450 if there is a healthy embryo to transfer. 

Of course with the current proposals by the government the price may increase after January 2016. 

***
To everyone still reading and following our journey, thank you. The overwhelming support and love we have received is the only thing that has been keeping us going. I would have given up by now if I didn't have you. 






Saturday 14 November 2015

Smiling but dying inside: our DNA results

I haven't slept properly since my 20 week scan back in early August. Each night I lay awake until around 3am wrestling with  my grief for Sebastian and my anxiety for the future. I've lost all my passion for everything I once loved, whether it be my work (although I have not yet returned) or my never ending desire to save every animal. I just can't find the energy to fight those battles when I now have my own.

This past week has been no different. 

On Thursday we found out the first half of our DNA results. We were given the news that the microdeletion of chromosome 15q11.2 that Sebastian had was inherited through me. Whilst this is not a fatal diagnosis and was thus secondary to Sebastian's skeletal dysplasia, it is known to affect people through the routes of autism, mental health, learning difficulties, epilepsy and some other physical disabilities also. I am, an unaffected carrier and my parents are now being encouraged to also be tested. 

When we were told of this news we were shocked. The doctor told us as if we were expecting it to have been the case. But we had convinced ourselves it was spontaneous in order to get through the past 7 weeks.  As we sat in her office, the same office where she told us that Sebastian was going to die, we stared at her with hope in our eyes, She paused for a moment and looked at me as she said, "Lauren we found that you are the carrier to this microdeletion" 

At first I was shocked. I turned to James and said "it was me!" As if he hadn't been sitting next to me the whole time. We had taken taken bets on who had it but neither really believed we did. 

After the initial shock my heart sunk. 

Tears welled up in my eyes as I came to terms with the fact that I had given our little boy this diagnosis, another potential struggle if he was to survive. I couldn't believe it. To be honest, I still can't. 

I feel like our job as a mother is to protect our babies, to fight their battles for them and to give them strength to get through life - all three things I now know to have failed at with Sebastian. Why couldn't this have been spontaneous? Didn't the universe know I have enough guilt to live with? Why did it need to kick me when I'm already down? If we next find out that I have also given him skeletal dysplasia, the condition that took his life, I honestly will give up. My heart breaks just by thinking about it.

My family have all asked me how James is regarding these results, and to be honest he is doing well. He is being incredibly strong for me and has not shown one ounce of disappointment, even though I know he is feeling it. He is trying to be supportive to me and lessen any blame or guilt I put on myself. He does not see the microdeletion as a big deal as now that he knows I have it, he believes Sebastian (or our next baby) could also have been just fine too. It's a positive way to look at it, I guess.

So, what next? We don't know. 

The results for the skeletal dysplasia could still be months or years away (although the geneticist is going to try and have the tests completed at an alternative lab to get it faster), and the worst is that we may never know what gene mutation caused it. 

As many people who know us would know that we would like to give Sebastian a sibling as soon as possible. Our arms literally ache just at the thought of not being able to hold and cuddle Sebastian, or to complete my pregnancy. It was just today that I opened my emails to be reminded by a subscription I joined that I should be 33 weeks pregnant. I can't even bear to be near a pregnant woman lately. The wonder of what size my belly would be if Sebastian was still here, or whether I will get to ever experience that again is so overpowering.  It controls my thoughts until I end up crying. It's hard. Really hard. I am crying now just at the thought of it and I know eventually I will be numb to the whole idea because it is that tormenting.

I know that at the moment we have three options (which is great if you are an optimistic person, but I struggle with optimism at the moment). Our options are:

A) try naturally and risk it all. They can do a CVS at 10 weeks and determine the presence of microdeletion; and then if we choose we can terminate the pregnancy if we don't want to gamble the chances of the baby being affected or not (yes, that's right they give that option to parents who have lost a baby - like that decision is made so easily).

B) start IVF with PGD. Now that we know this microdeletion is inherited, there is a 50% chance for each of my eggs that they are affected. Whilst The PGD part of IVF is very expensive, there is no guarantee of success, as embryos may not last the biopsy, they may not "stick" once transferred and they simply may not collect any eggs that are unaffected. However due to the costs of this process we will probably be only able to afford one attempt as the money will come from our mortgage, so it would be smarter to wait until we get all the results so that they can check embryos for that too. We are able to start making appointments though and going on wait lists.

C) wait for the skeletal dysplasia results and then decide to either do option A (if skeletal dysplasia is not inherited) or B. 

I really, really hope that we are not carrying a defective gene for the skeletal dysplasia as our chances then to find an embryo (naturally or through IVF) that is healthy become much less (25% chance baby will have skeletal dysplasia on top of microdeletion's 50%).

We are well aware that we can get eggs donated (and I have had amazing people offer theirs) and adopt children, and they are at the back of our minds. But for now we need to fight for our chances of having our own as otherwise we will always wonder. 

I have no idea how I am able to move forward from here. There is now some concern as to my own health in regards to the microdeletion as it has been known to adversely and significantly affect people in adulthood, so I have that thrown in the mix. 
But I also don't know how next week I am going to return to work, back to a routine like nothing happened. How I am going to live each day without knowing when I will find out the remaining results, or how to decide on our options. The constant concerns taunt me 24/7 and as I write this at 3.52am, I wonder whether this is my new normal, a sleep deprived battle full of anxiety. 

Some days I wish we didn't have the technology we have now as the knowledge we have about our genetics can be overhwhelming and just taunts us really with all the "what ifs" - I wonder how blissful it would have been to not know any of this information...



Thursday 5 November 2015

Standing Strong



In October, I wrote an article for The Mighty to raise awareness about Pregnancy & Infant Loss as well as national dwarfism month. I shared a bit about Sebastian as well as our family photo, after all I had to provide some background to the story. The article was well received by the audience of The Mighty, and many people thanked me for sharing it. I felt as though I had brought comfort to other parents in assuring them that they are not alone, just as other parents have supported me.

When The Mighty told me that they were pitching my story to Yahoo.com, I was overwhelmed. I was not expecting it to be shared, but was grateful in that it may help just one other parent at some point, whether directly or through someone they know reading it. So I agreed.


However, since it has been shared by yahoo.com (and please note that my article has been edited) I have read some of the comments, and whilst many are supportive and have used my story as a platform to share their story and thus also raise awareness, many others have been negative. In fact, some people who are not educated around the issue have used my story as a platform to debate abortion; whilst others have seen it as a cry for sympathy or felt like I was asking for their opinion on whether I should have children in the future. These people do not know me and have obviously not read my blog to understand Sebastian’s story in full (and I am guessing they will not see this either – however, I want to write this so that people know that I will not let them stop me).

Your comments, which I assume make you feel super powerful and strong behind your keyboard, do hurt. However, I want to thank you. Your comments have proven my point exactly as to why awareness should be raised. Yes, grief is a personal journey, but so is many things in our life that we still manage to share. For instance, your negative opinions are your personal opinions, yet you found it within yourself to share them – I find this hypocritical and amusing. 

So, I apologise if I have offended people for sharing my story, but I hope that you realise that by not talking about the babies who are born sleeping, silently, not breathing, or dead (however you want to refer to it) we are forcing mothers and fathers of angel babies to grieve alone. The less we raise awareness, the less people talk about it - The less people who will understand may lead to less relevant support being provided. Unfortunately, I have spoken to many people who have had their baby die and have received no support. So, just because you have received support (or would give it) does not mean other people would have.

Some people have asked whether people really do say “get over it”, I think the mixed reactions in the comment section of this article pretty much sums it up. People do say it and whilst many more are supportive, empathic, and very encouraging, there are heartless people.  

I know that some people say it as they are lost for words, and these are not the people I refer to in my article, usually the people who are lost for words say those comments still with love and empathy. I appreciate their attempts to try and find words. I am sorry if you felt insulted by this comment.

I think it is time that we all learned the real statistics of pregnancy loss (which was edited out of the yahoo article), - 1 in 4 pregnancies in Australia will end in miscarriage or stillbirth. Approximately, 150 000 couples deliver a ‘sleeping’ baby each year – that is a lot of grieving parents! I encourage everyone to familiarise yourself with how to support a grieving parent, because it does strike when we least expect it and to people we don’t expect. If you still do not want to read my ‘garbage’ then I applaud you for reading this far into my post and I hope that you never have to go through such a significant loss.

To the people who have experience a stillbirth and miscarriage and found my story triggering or offensive, I am sorry. I didn’t mean to share my story to hurt you even more, I was trying to achieve the opposite. I hope that you have support and find healing. I also thank you for being brave and sharing your story.

Thank you to everyone else for opening up to me, providing me with encouragement and support. My journey is far from over and our future is filled with the unknown. You will never know how much your comments meant to me.

This will be the only response I will make to the trolls, as I do not wish to taint Sebastian’s story within this blog with any more negativity. So once again, thank you to those who have reached out to me – you are a blessing.

With love,

Lauren

Strangers have been making me smile

Ever since Sebastian died and we started telling his story, we have reviewed so much support from people we know, and then from people we have never met. The community that has got behind us has been amazing and has made us feel like we are not alone. 

I started an email and placed it on this blog, and atleast once a week we receive  an email of support from a stranger. Below is an email that arrived this week, it arrived on a day when I really needed some hope and something to smile about. Mary, who has experienced a loss of her own, shares words that are full of hope, something that I need.



Here is what it said: 

Lauren-
You don't know me, but my name is Mary. I am 38 years old & live in the US. your post came up on my Facebook feed from The Mighty. I've been reading your blog this morning.

I want to tell you where I am: I am four & a half years further along in this journey than you. I lost my daughter Kathryn in May 2011 at 12 days old.

Here is what I can tell you: it will get better. It will always be with you. He will always be with you, but IT, the grief, will ease. There will always be things that catch you off guard: a smell, a song, a phrase, a street, but IT will get better.

Some days you may actually find yourself feeling normal. Most days, though, you find you've just adjusted to your new normal. Your friends may change. What's important to you WILL change. The love you have for any other future children will be so much deeper. And the passion you have for other mothers on this journey will be unmatched.

That feeling? The heavy, tight ache in your chest? It will ease. And it doesn't mean your forgetting your son. Your precious Sebastian. It means you're learning to live with that love. Loving a child you can't hold. Living a life that you can't imagine.

You will learn that life is so incredibly beautiful. And that this pain, this burden you've been given, is so incredibly useful.

Use it. Channel it. You will get there. I promise. But it will take a while. Until then, get up every morning, take a shower, get dressed, and BREATHE. you've got this, momma. You've got it in you. Sebastian is IN YOU.

All my love,
Mary Kelley
Mom to Thomas (6), Kathryn (5-13-11 to 5-25-11), and Micah (2)



I couldn't thank Mary enough for this email. It is so beautifully written and even though she is on the other side of the world, it brought tears to my eyes to know that once again we are not alone in this battle and that there is support available. Imagine a world full of people like Mary, that would be beautiful.









Sunday 18 October 2015

Signs of Hope & Utter Sadness

"Dear Sebastian

It's been 9 weeks since you've been gone. Sometimes my chest hurts so bad I think I am dying; I know I am not, and I know its silly to say that when you have experienced the feeling of death. But that is how heartbreak feels to me. I now know so much more about how grief shows its ugly face. I have likened to the idea that grief is as if I am standing on the beach and the pain and torment of missing you are the waves. Some waves are small and just keep my feet wet, but it is always there. Other days the waves are so big that it knocks me over and I struggle to stand up. The waves haven't won though, I am still fighting for you.

I know the feeling of being stuck and standing still, like the world is spinning around me and I cant catch a breath. But please know, I breathe every breath for you. There is not a minute I do not think about you. I've devoted my life to you. I miss you more than anything. If my tears and words could bring you back, I am sure you would be home by now. I wish so badly that I could bring you back, I would do anything to just be able to see your smile again and hold you. I've never felt so numb before, so empty. Each day that goes past I want to honour you. I want the world to know about the little life that was lost and the impact you have had. You have taught me so much about life, myself and family. You have given so much and taken so little. I want you to experience a life with happiness, I want to share in that happiness with you.

I know you are with your Dad and I; I know that you you're watching over us everyday. I see your signs and I pray you're telling me that you are OK. I love you my baby boy. You mean the world to me. You inspire me to be a better person.

Love you always and forever.
Mummy"

------------------------------------------------------------------------------------------------------------------------
I do know Sebastian is with me. I've been told that and I've had pretty blatant signs. Even if these signs can be scientifically proven, I don't care. I'm a grieving mother and I will believe in what I need to in order to get through.

But just so we are on the same page, here are the signs I have received:

The Medium/Psychic Reading
When I was pregnant, only a few weeks before I found out Sebastian had passed away, we went and saw a Medium (who did not know I was pregnant). She told me that there was a ball of light around me and it follows me everywhere. She asked if I had a miscarriage at some time? I told her no. Little did I know, it was around the corner. She was insistent it was not symbolic of anyone else's baby. She did not continue on this subject as I became quire worried.

Rabbits
If you've been reading my blog you would know how rabbits are now special to us. The last day I was pregnant with Sebastian we saw 2 rabbits on the beach. For the next 10 days we saw more in places that were unexpected. We have since seen rabbits on days that were of significance (for instance, fathers day). How many people can say that they have seen a rabbit in different locations on consecutive days? The day that Sebastian was born, my Father and Step Mum were with me. When they returned home, a rabbit was in their street. We would all continue to see them non-stop. Mum was also driving one day on her way to my house. I was pretty upset. As she was talking to me on the phone she saw a white rabbit sitting on the side of the road. James' aunty could not make it to Sebastian's funeral and also saw a rabbit in an unusual place the day of the funeral. The point is, we have seen so many rabbits!
Without knowing the connection, we have also received many gifts (books, frames, stuffed animals) all of which have been (or about) rabbits! I think it is truly awesome, and now whenever I see one (I always pray one crosses my path on bad days) I think of Sebastian and know that he is OK.

Beetles
There have been two occasions where I was very upset in public. One was when James decided I needed to go back to our favourite picnic spot at night and remember Sebastian there; the other was at a child's birthday party.

When we were going to the picnic spot, at 4 different locations and times that day. We had a beetle fly on to one of our arms. They were different in colour, but were all small. It was enough for us to believe it was a sign and accept them. Again, when do you get 4 beetles on your same arm on the same day? Similarly, at the birthday party, a beetle flew on me in the same position on my arm.

11:11
I know people can say this is a coincidence, but I seem to always look at the clock lately when it is 11:11. I always make a wish for Sebastian, but I can't tell you what it is - it might not come true then!

The noisy vase
We have a vase with our remotes in it at home, one night there was only one remote in it. James and I sat on the lounge next to it. We were not near the vase, nor were we looking at it. The windows were not open and there was no breeze. Suddenly we heard the noise of a remote being dropped into it and moving around the vase. It lasted for about 2-3 seconds and we could not explain it. I looked in the vase (at which time it had stopped) and the one remote wouldn't have been able to move/fall by itself due to its size. We have no idea how this happened.

The chair
The chair is probably the weirdest of all. I was in bed one morning on my phone (my cats were with me) and James was at work. I heard a loud noise (I thought it was the broom falling over), that went for quite a few seconds - maybe 10. My cats jumped up and ran to the door, they were all bushy tailed and hiding behind the corner with jus their heads peering out. I went out and looked to see that our dining room chair was in the middle of our hallway. It was not the closest dining chair either, it was the one furthest away. It's a reasonably heavy chair. I called James and asked him if he left the chair in the hallway. He said no. He didn't believe it. He made me check all the doors and windows to make sure no one had broken in (the chair was placed below our man hole in the roof). Obviously everything was locked and no one was in sight. My handbag remained on the chair where I left it the night before. It didn't move. I tried different things to see if that could have moved it (pulling the chair by my bag handle etc.) but the bag would just fall off. I can't explain it!

Of course my favourite was the blue orb that appeared in a photo at Sebastian's funeral - you'll have to go back to that post to see it. 

I am sure we have had other little signs, and I will always continue to ask Sebastian for help or strength through certain situations. I know he is now my guiding star.  



Sending love in a candle

October 15th is the international 'wave of light' remembrance day, where it is encouraged that at 7pm everyone lights a candle in memory of the babies and infants taken too soon.

James and I attended the remembrance ceremony held at Pinegrove Cemetery in Minchinbury, NSW. The event was hosted by Guardian Funerals and Angel Gowns Australia. It was a beautiful ceremony, and the songs they played made me tear up. It was not long until a box of tissues circulated the chapel for all the grieving parents.

Whilst I was at the service, I was finally able to meet Fiona. Fiona is the founder of Angel Gowns and it was her that heard my story and hand-delivered a beautiful wrap and gown the very next day for Sebastian to be buried in. It was so nice to be able to thank her for her efforts in person. I truly can't express my gratitude enough for that organisation and for Fiona's commitment (I recently heard a rumour that she is nominated for Australian of the Year, which I truly believe she deserves. If this is able to be voted on, I strongly encourage everyone to vote for her - she is an inspiring woman).

The songs that were played were all very heart warming, and I particularly liked one (gone too soon by Daughtry). I have placed the list of them all here, if you are interested in hearing them I recommend looking them up - have some tissues ready!



During the service we were all supported to write on a candle and place it on the grass to make a giant angel, it looked beautiful once it was all lit up. There was already a candle with Sebastian's name on it, so we wrote a little message each to him. Mine read "we miss you so much" and James' read, "you're the best little guy ever". We carefully selected where on the angel the candles should be placed (James chose on the wing in the corner and slightly away from the others so he could see it later when it was lit; I chose to place the candle at the very top in the halo, to signify him as being in the safest part of an angel).  I also wrote a couple more candles out, one for the little baby girl (Madison) who passed away in 2012, whom we received a bear in honour of; the other for a friend whose baby boy, James had also passed away a couple of years ago.


I would also like to thank my many friends and family for lighting a candle also. It meant a lot to me to see you all light one to remember our little boy and the other babies who grew their wings too soon. The love and support we receive every day is amazing, and to be honest we wouldn't be where we are without you. I truly am blessed to have you all in my life.

Here are the candles people had lit for Sebastian.


And this beautiful candle that has been personalised was a gift from my cousin Kylie (yes, the same cousin who organised the ribbons for Sebastian's funeral), she is such a beautiful person and has been an amazing support to me. I look forward to lighting Sebastian's candle on special occasions and when I miss him (OK, I will try not to light it every day!).





Thursday 8 October 2015

Siblings for Sebastian - Will we get our rainbow baby?


Future children have been on my mind a lot lately. We miss Sebastian more than ever and our hearts ache trying to fill a void in us. We know that we will never replace Sebastian, and we don’t want to.  It is funny how when you lose a baby your mind is full of different thoughts, some hopeful, more not. I should be 28 weeks pregnant right now, full of hope. Not empty and full of wonder whether future siblings for Sebastian will be joining him in heaven..
The main thoughts we have had are that of what others would think of us if we were to fall again so soon. I have spoken to another Mother who has an angel baby and she was ridiculed for falling straight after, people claiming that she had already moved on from her baby she lost and wanted to forget them. I want everyone to know that there is no way in this world that I would want to replace Sebastian, and there is definitely no way I could ever forget him or love him any less once another child comes along. There will always be a place in my heart for him, and a part of me missing that died when he did.

Another thought that pops into my head is whether Sebastian would feel like we are replacing him. I believe that he is with us in spirit and watching down on his family from heaven, guiding us. But I would be so hurt for him to think that he has been replaced. There is nothing anyone can say to this to help me come to terms with it – nobody really knows the answer as to whether he is here or not. But I have been speaking to him a lot, and I have asked him that when he is ready, and he believes we are ready, we would like him to select a sibling for him and send them to us. This is what gets me through all these different thoughts.
It is a very difficult decision as to whether to have children again or not, especially when referring to Sebastian’s autopsy results and seeing the pain he went through and knowing that there is a chance he did not receive his illness spontaneously. We have had people say to us “don’t worry, you can have another” or “just try again, lightening doesn’t strike twice”.. well you know what!? These comments hurt. We wanted Sebastian so to just go and have another baby, implies that he can be replaced and that void in our hearts will disappear (I just want to say that I know people make these comments to try and give us hope, and we appreciate this… I think the nicest remark we have had said was “I hope that one day you both can experience excitement and happiness again”, because the truth is, so do we). These comments also hurt because we may not ever get a healthy baby.

However, we want answers. We want to know whether we gave him the genes that took his life. We want to know how this could have happened to him; and we also want to know what the recurrence rate is for future siblings… and so it goes like this….
If you read my post about Sebastian’s autopsy results, you would know that it is thought that he had Type 2 Osteogenesis Imperfecta as well as a microdeletion of Chromosome 15q11.2, both these diagnoses are unrelated. Therefore, we are now fighting two battles.

After we received Sebastian’s autopsy results, they sent us to get DNA tests completed. This involved a simple blood test from each of us. They will then use our DNA and compare it to Sebastian’s to see whether his affected genes are identical to one of ours (in a nutshell). The blood test we received though did have a little bit of a humours story as it was completed at the Children’s hospital where Sebastian’s autopsy was done. So we waited in the waiting room with lots of little kids and babies who bravely got their tests completed. We felt silly in that we both dread blood tests, yet these incredibly brave kids, some who had cancer, were getting it- ‘toughen up’ I said to myself.
One of the mothers complained to her friend that adults were using the facilities, I felt like telling her our son had died and they need our blood for his autopsy results. But, of course I didn’t.

At the end of the test we were each given a kid’s band-aid. It was hilarious because the nurse specifically picked out a purple Minnie mouse one for James. He was not impressed. 


 Will Sebastian’s siblings get Type 2 Osteogenesis Imperfecta also?

We don’t know. The results could take years before we know the answer to this. You see, this is a genetic condition, it could have been spontaneous and not have come from myself or James, or it may have. The reason why it could take years is that our chromosomes are like encyclopaedias and the genes within these chromosomes as chapters, the current test that is being performed will first go through these encyclopaedias and see if a relevant chapter is missing. If not, they will then perform another test to see if a page is missing. If no result is there, they will then perform the test again and see if a paragraph, then a sentence, then a word is missing or a spelling mistake is observed. This testing can take literally forever. There is also no guarantee that they will find anything missing or wrong. We may never get an answer.
However, if they find that Sebastian’s OI was spontaneous, then the chances of recurrence are very low. In fact, we would have the same chance of this happening again as any other expectant parent. We pray this is the case.

If we find out that Sebastian was given an affected gene from myself or James, the chances of recurrence increase from 25% to 50% for our next children.  If this is the case, I will explain down below what our options are…

Will Sebastian’s siblings also have a microdeletion of chromosome 15q11.2?
The answer is similar to the above, except we will know within 6-8 weeks from our DNA test. That means, we will know by the end of November (hopefully!).

The chances of this microdeletion occurring depend on whether myself or James are carriers. We were told by another parent that 10% of people with this microdeletion have it spontaneously, whilst the rest are given it from parents. The microdeletion is incredibly rare, so to be in the 10% is even less common – great.

If one of us is a carrier, there is a 50% chance our next child will get it also. There is also a chance that we (as a person also affected) may develop a physical disability in the future – double ouch.
This is not a lethal condition, however its effect on life can be vast. Instead of me explaining it all to you, I think the best bet is to read about it here: Rare Chromosomes


Future pregnancy options..

When we decide to have another baby our options will depend on the results from the above DNA test. We have not made any decisions yet as to what we plan on doing, but I just thought I would give you all the options so you can see how difficult it is…

  1. We can take the chance and try for another baby naturally, but we will need to prepare ourselves that our next baby may also die. If we went this path we will be monitored by the tertiary foetal welfare unit at a bigger hospital. I will also be required to complete a CVS test (similar to the amnio test, but a bigger needle as they take a sample of DNA from the placenta) at 10 weeks gestation. This test comes, no doubt will be just as painful, and also comes with the risk of miscarriage. If the test comes back positive, the doctors then will give us an ultimatum for interrupting the pregnancy. They will also perform early ultrasounds to try and pick up any skeletal problems – however these might not be observable to 20 weeks. There is a chance that if affected, our next baby could die in utero again.
  2. If we find out that one of us are carriers to either Skeletal Dysplasia (OI)  and/or the microdeletion, we could consider using Preimplamantation Genetic Diagnosis (PGD) & Preimplamantation Genetic Screening (PGS) IVF. This means that we would go through the normal IVF process but they will test the embryos to see whether they are affected before implanting them. However, this is not completely covered by Medicare and from the people who I have spoken to that have done this process, it is estimated to cost $20,000, with $15,000 out of our pockets. There is no guarantee that this process will work, and whilst chances of miscarriage are slightly minimised, this does not prevent our next child from developing another rare form of disease and also being born sleeping from other causes (womb infection, placenta problems etc). There is also the chance that we will need multiple attempts before an embryo ‘sticks’ when transferred to me (each additional transfer does require more money).  I don’t like mentioning the money side of things, because if I could have done this to prevent Sebastian going through what he did, than I would have, regardless of costing.
  3. If we find that one of us is a carrier for microdeletion, but they have not yet identified the gene leading to skeletal dysplasia. We can do PGS IVF (same process and costs as above). However, we run the risk that our baby will also have skeletal dysplasia and die.

We cannot explore PGD IVF until they have solved the mystery of Sebastian’s Osteogenesis Imperfecta (if it is even that), and which gene mutation is responsible. As I said before, this could be years away and we may therefore have a very long wait, although our geneticist has said she is hopeful that it will only be 6 months.

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As sad and heartbreaking as it is, we can sort of find the silver lining in that we are thankful for Sebastian. Without Sebastian we would never have known about the chromosome deletion, and if we are  carriers, he has potentially saved his sibling’s lives, or from a lifetime of suffering. If we are carriers, he has also helped us to concentrate on our own health in preparation for the small possibility that we may develop a form of physical disability in the future. For a baby who was in our lives for such a short time, he has changed ours forever in multiple ways.

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 So I guess, we really can’t just ‘try again’, there are so many things that impede on that decision.

Now we just sit and wait,

We wait for the amazing medical team to find some results,

We wait for our life to be pathed before us,

We wait, pray and search for hope that the right path will become clear soon.

What would you do?

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.

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**PREGNANCY & INFANT LOSS **


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:





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**SKELETAL DYSPLASIA**

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.

Monday 28 September 2015

Searching for Answers: the dreaded preliminary autopsy results


Before I write about Sebastian's preliminary results, I want to share with you a photo that means the world to me. It was taken at the hospital when I delivered Sebastian. It is our one and only family photo.
We have blurred his face because in reality we want to protect ourselves and Sebastian from strangers who come across the blog and may treat his beautiful photo without the respect he deserves. 

You can see in our faces the joy and heartbreak occurring. We won't ever get another photo of all of us together. So this photo means the world to us. I often look at this photo and think about Sebastian's results, I can not do it without crying. It truly breaks my heart what Sebastian and we, as a family, have gone through. 

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The week that Sebastian died, we were told to contact the Genetic counsellor if we hadn’t heard from her in three weeks. So I did and we were given an appointment for Monday 21st September. We were explained that they had no answers yet, but would like to meet us and tell us where they were up to.

When we arrived we were surprised to find out that they had the preliminary autopsy results. We were not prepared to get them that day and felt a little vulnerable as we had not emotionally prepared to hear the results. However, we agreed to talk about them as there was no way we could walk out of that room without knowing what was written on that piece of paper.

The Geneticist and Genetic counsellor, were once again very supportive and sweet. We loved that they asked us about Sebastian and our time we spent with him. We loved that they remembered his name and referred to him by it. We loved that they talked about his funeral and validated that it sounded like a nice farewell. We really appreciated them acknowledging him as a little baby boy who we lost – finally professionals who cared! We would not hear them refer to him as a “fresh, small foetus” as the autopsy report described him, and we would not hear them talk about him as a medical subject, instead of a person. I know it sounds small, but this really helped us deal with the news they were about to tell us.

We talked to them about Sebastian’s leg being broken and his bone protruding the skin. They agreed that this was observed and that in fact, every bone in Sebastian’s body was broken – his legs, his arms and his ribs. We mentioned how short his limbs were compared to his body and the bowing of his arms and legs; the doctor informed us that the X-rays showed that his limbs had broken in utero multiple times and had mended in this position, so they could not tell what his original limb structure looked like. Sebastian also had no skull, all his bones lacked density (except for a small section in his spine) and his skin, which we referred to as ‘sticky’ was recognised as underdeveloped and easily broken. His organs (his intestines, gall bladder, chest wall etc.) were also incredibly fragile and were easily torn, just by touch or movements. He was very small for his gestational age.

It was hard not to cry when hearing this news, “that sounds so painful” I said with tears welling up in my eyes. The geneticist acknowledged that it does sound painful and that there is no known answer as to whether he would have felt pain. She said that there was not enough research to indicate a gestational age that a baby does feel pain; however she assured me that being inside his Mummy’s belly would have cushioned him a fair bit regardless. I pray he was not in pain. I hope with every inch of my body that he did not feel pain. No baby should ever have to feel pain, especially the pain of every bone in their body breaking with every movement.

The lethal form of Sebastian’s Skeletal Dysplasia has not been 100% agreed upon yet by the doctors. However, it is suspected that he had Type 2 Osteogenesis Imperfecta (OI) however other diagnoses are being explored. As I read about the symptoms of OI, it matches perfectly with how Sebastian presented when we saw him and the condition we were warned about previously, regardless of the name, it was these symptoms that that took his life.

 The doctors said that if he survived pregnancy we wouldn’t have been able to hold him without a part of his body breaking. A cough could break a rib, a kiss could fracture a cheek bone, being dressed could break a lot more. I know it is horrible to say, but I am grateful that he never experienced that pain outside of utero, and as much as I would love to have been given the opportunity to see his eyes shimmer, or a spark of his personality, I know that is selfish. I realise that the amount of pain he would have been in if he survived would have prevented the smile I yearn to see. I don’t know why our son was given this condition, I don’t know what we did to deserve it, whatever it was, we are sorry and wish that we could take it away or bear it for him.

We were not expecting any other findings, we were happy that they were starting to determine whether OI was the suitable diagnosis for his condition. However, we were told that the autopsy and amniocentesis (which I did whilst pregnant) results had found something else. Our hearts sunk. What else could our little man have gone through? How much more suffering did he have to endure? How much more bad news could we take?

During a count of Sebastian’s chromosomes, it was found that he had a microdeletion of chromosome 15q.112. This diagnosis is not fatal, and sometimes does not affect anyone. Apparently lots of people are walking around without this chromosome, unaffected. However, it has also been found to cause other conditions – physical and/or intellectual disabilities, autism and epilepsy. So not only would our boy have lived a life with fragile bones, he may have also been subjected to seizures, a wheelchair and learning difficulties. He really had every worst possible scenario thrown at him. I am so impressed by how long he did last throughout the pregnancy. He lasted 20weeks and 2 days with all of these conditions  - something that most people couldn’t even fathom to live with. He is definitely our little courageous hero.   
When I reflect on Sebastian’s lifeless body in the cot at the hospital, and that gorgeous smile he had across his face I can’t imagine all of these medical terms they have applied to him. He was (and still is in our minds) so perfect. We were able to look past all of the physical deformities posed on him and just see him for our precious, beautiful boy. He has taught us so much about ourselves, brought so many people together and gave us a love no one can understand. He wasn’t given a chance at life, he will never get to grow as a child, he will never get in trouble off us or be sent to a naughty corner, he will never get to experience friendship, family, love and life. But we know, as his parents that even though his short time on earth is over, we will continue his legacy and we will tell everyone about what this little strong man had been through and how he changed our lives forever.