Signed, sealed & delivered: Sebastian's final autopsy results.

Monday 11th January at 1pm


Children's Hospital at Westmead.




Today we met with the Geneticist and Genetic Counsellor for Sebastian's final results.
I had been so nervous all week; I couldn't eat today and had butterflies in my stomach all morning.
I hadn't cried, but I was fighting the tears back.




I said a prayer this morning and read the book about St. Gerard. I searched everywhere for some hope that we would receive good news. I wasn't sure how I would handle (or if I could) handle any more negative news and today we would find out if Sebastian inherited his skeletal dysplasia from us. We would find out if one of us killed him.. (I know that we didn't intentionally kill him, I know that we would never have known that this was going to happen - but there is so much guilt).


We sat down in the same room we sat in for all our previous meetings. The Geneticist and counsellor were once again all smiles and genuinely interested in our concerns and feelings. I told them that I was nervous.




The Geneticist confirmed they have the results and have had Sebastian's for a little while but were waiting for our DNA results too (mine had taken the slowest as it occurred over the Christmas break), in fact they only received the results last week.


The geneticist explained that Sebastian did indeed have Osteogenesis Imperfecta, a form of brittle bones disease, the worst kind that they had seen. They could not explain why his condition was so severe considering the results showed exactly what they had thought (and is shown in babies who die of the same condition), it is a little bit baffling to be honest.


Anyways, the Geneticist said to us "Baby's gene mutation was dominant. We checked your blood results and neither of you are carriers for this condition. it was random"
I became overwhelmed. I teared up and could hardly string a sentence together, "really?!" I said with tears in my eyes and a huge smile. I was so relieved as the Geneticist confirmed it was not inherited from us. In fact the gene mutation was as small as a spelling mistake, it was a 'G' when it should have been a 'T'. I can't remember what she said after that. I needed time to take it all in. I was in shock and could only keep thinking, "We didn't kill him. We didn't kill him. oh my god, we didn't kill him..."


I was lucky that the geneticist flicked through her files and I saw his X-ray, "is that his?" I asked. "Yes, it is." we looked over his X-ray and looked at his little gorgeous body; his broken bones and shortened limbs were visible, he was still perfect to me, "he is so cute" I said and the others smiled and nodded. I had to get a copy - and I did. I need to keep anything and everything that relates to him - we will never get another photo so anything that I can get my hands on is precious.




So, we did not kill our son but we are still left with the question of 'why?" - why did it have to affect our boy? Why must I have been the 1 in 4 pregnancies that end in loss. I wish our little boy was here, I wish this didn't happen to him. I miss him so much, I always will. I will still cry for him daily and still talk to his ashes. He is our first born son, the first grandchild, our little man with wings who we love so much.

Storms Continue: Sebastian's due date

It's not his birthday, it's just a missed milestone.




January 2nd, 2016.




The day Sebastian was expected to be born. He may have come early, he may have come late, so I cannot say that that date was definitely the day he would have arrived..


Yet, when I woke up all I could feel in my chest was tightness. All I could feel was heartbreak.
I cried non stop and asked James "do you think I would have been at the hospital by now? what time do you think he would have been born?". I couldn't help it. I had to wonder about all the 'what if's'.

All I wanted to do was sit and cry. curl into a ball and wish my little boy was with us. I spent the morning doing just that; I hugged the cold plastic box his ashes are in and whispered songs and words of love. I listened to the recording of his heartbeat and wished more than anything that he was with me.


I would give up the world just to have months of sleepless nights because he was unsettled; I would do anything just to have him here - putting up with anything would have been worth it.


Midday came round and James suggested we went for a drive. So we drove to the beach, the same beach we went to when we were told he would die. We again walked along it, collected shells and some sand to go in a little frame I am putting together. We explored the rock pools and I wrote his name on a rock with a piece of chalk. I wish I took a photo of it. It was a nice afternoon and I spent many hours looking up to the sky and talking to him.


These few months have been so difficult and I am surprised we have been able to get through it. I cry everyday, usually when I am alone. I cry because I miss him, because I think of his beautiful smile he had, because he never got to experience the world like he should have and because I catch a glimpse of something beautiful and unusual that I like to think is a gift from him.

Sending our love to heaven for Christmas

Sebastian may not have arrived by Christmas this year, if things weren't the way they turned out. He may have spent it in utero waiting for his due date to arrive.

I remember when I announced my pregnancy and everyone joked that he may come on Christmas Day, to which I would reply that I would prevent it by laying still for all of December.
 

I never expected to spend this Christmas without him. Once you fall pregnant your whole future includes your baby, you never imagine that baby to die. You never consider spending Christmas grieving.It breaks my heart that we had to spend it without him. We considered not celebrating, we have nothing to celebrate. It's so hard to find things to be grateful for when you've had you're baby taken away from you. But we did it. I can't remember the reason why we chose to do it, but we did. Maybe it's because my family subtly pressured us, or because we felt like we would be letting people down..


But we did it.


...And for the parts of the day where we sat with family and friends, we even smiled and laughed. But inside we were dying. At home, where we sat alone, we cried. Why is our boy not with us!? Why us!?

This is just the beginning of milestones Sebastian has missed and we will forever mourn. He may not be with us on earth, but he is with us in spirit.. And regardless of that it was his first Christmas in heaven.

I don't think we would have been able to get through the day if it wasn't for the thoughtful gifts from family members. We were given so many cute momentous to help remember Sebastian and to help include him on the day. If he wasn't recognised in some way I think I wouldn't have lasted. So we were so grateful to have received these. I will post photos of them all soon - they are all so precious.

To all the family and friends who sent their love, prayers, kind messages and very generous gifts, thank you.

It's so hard to explain the pain of losing a baby whose lifeless body you have only met. We love hearing people mention his name and include him on special occasions, whether it's his first Christmas or his twentieth, I don't think it will ever get old.

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. 

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...

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.