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.