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. 

***

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 21^st 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.

Sebastian is home!

It was the Saturday following Sebastian’s funeral. We were feeling so incredibly empty and as though the world moved on and we were expected to as well. Don’t get me wrong, we were certainly still receiving some loving messages from family and friends, but we felt as though we were expected to have received closure from the funeral and should now commence healing.

However, this was something that we could not do. We could not start healing until we had our boy’s ashes home with us. The funeral director had previously told us it would be two weeks before we would have his ashes. This felt like a ridiculously long time to wait and I refused to wait it.

After researching the process of cremation, I learnt that Sebastian was cremated on the day of his funeral, three days ago! So I was confused as to why it would take two weeks. I spoke to my mum and she suggested I call them and see if he is ‘ready’, so I did. The lady on the phone asked me “had someone made contact to tell you to pick him up?” my response was, “no, but I am impatient and don’t want to wait two weeks. I need my son home”, she agreed that she would feel the same. Sure enough he was ready to be picked up on the Monday.

Monday came, it was 3pm in the afternoon and another funeral was occurring next to the office of the crematorium. We went inside and a very polite lady invited us in her office which was full of empty urns and different types of plaques. She sat us down and asked how we were going, it felt like she was trying to gauge our readiness to collect the ashes (maybe that is why they like to wait 2 weeks!?) or to provide us with counselling. We politely answered her questions as we once again would hold back tears. We hoped that we would one day be able to talk about Sebastian whilst smiling with pride, instead of having our eyes well up with tears.

The lady asked whether we had seen what ashes came in and showed us an empty container to prepare us. We had every intention of going there that day to pick out an urn, Sebastian’s little home, or cosy place for his body. But the urns for babies on display did not reflect the preciousness and handsome looks that was our boy. As the lady left the room to collect Sebastian, we discussed we would ask whether she had alternatives. However, when she returned holding a white gift bag, that essentially was holding our boy, we couldn’t bring ourselves to ask. It was horrible. We should be receiving gift bags full of presents at a baby shower, not a gift bag holding our son. We fought back tears and I avoided making eye contact. The lady leaned across James to hand me Sebastian “does Mum want to carry bubba?” I shook my head and said that his Dad could. I had carried Sebastian his whole life. James had only held Sebastian in a coffin; I felt he would like to be the one to carry him home. And he did.

We were so keen to leave the office; we didn’t want to be there any longer than needed. A cemetery is no place for a baby and we wanted to take ours home. We brushed off the lady’s questions once again and headed for the door – we could barely speak and we did not want to look into the bag in front of her, we didn’t want to appear any more vulnerable than we already did.

When we got to the car, we discussed whether it was appropriate to put him on the back seat like how a baby comes home from the hospital; however we decided it would be more of an honour if his dad held him in the front for the journey home. Once we were in the car, we pulled him out of the gift bag.

Sebastian’s ashes were in a blue/grey plastic container and his plaque from the coffin (the one I hated because it didn’t mention his Dad) was taped on the top. “It is so impersonal” James said as I agreed. It was horrifying to hear the ashes move inside the box as we each had a turn of holding it. We haven't moved it in any other direction since, because the sound is heart breaking. We apologised to Sebastian that he was once in my warm cosy belly and was now in a plastic box, when really he should be in our arms as we sing him songs.

We only live 20 minutes from the cemetery, but we thought that we would probably not drive around with Sebastian’s ashes very often…. So we took the ‘scenic’ route. We drove past all the local places we attend (shopping centres, petrol stations, parks, family’s houses etc.) We showed him where he would have gone to school and talked to him about the shelves we had set up for him at home. We explained that it was not finished (and still is not) as it was hard to decide how to make it perfect for him. ‘It’s a work in progress’ we explained.

When we got home I walked him around every room of our house and explained how it would be used if he was here, “this is a games room where your dad plays PlayStation, but it would be your toy room”, “this is where you would have baths”, “this is where we would have family dinners” and finally “this is your room, this is where you would play and sleep”. I showed him all the things we had bought him and sat with him in a rocking chair that James’ Mum had bought for us. I sang him a song and cried.

I eventually introduced him to our cats and then placed him on his shelf we had installed in our room. “you will be with me every night before I go to sleep, and every morning when I wake up”. It is right in front of where I sleep, so he is the first and last thing I see each day, and I love that.

He sits on the shelf with a few other gifts people had bought for him as well as a couple of bears that were given when he was born and at his funeral, as well as his little blue beanie and blanket that kept him warm when he entered the world sleeping.

The plastic box he is in makes me really sad. Whenever I touch it, it is extremely cold. I have wrapped him in a blanket so it isn’t cold anymore, I would put him closer to me on the bedside table on nights where crying replaced sleeping, and I would cuddle and hold him throughout the day when I felt as though parts of me are missing. I talk to him every morning and kiss him every day. It is not how I pictured saying good morning and good night to him, but we are so incredibly helpless and left with no alternative.

We had thought we could spread some of his ashes somewhere nice, but decided that he is a baby and should not be away from his parents. He should be kept whole and with us. He is my most prized possession in our house. Every day we leave the house we hope that when we get home our house has not been burned to the ground or he has been stolen. I know it is a weird thought to have, but if I was to lose his ashes, it would feel as though I was losing him all over again. I will never be able to be separated from him and I have not yet gone a full day away from home. I wonder how desperate I will be to get home each day once I return to work.

I feel so strongly about this that it has led me to put off purchasing an urn for him to be transferred to. I know that a nice looking Urn will make me feel better and show Sebastian how much we still honour his little body and care for him - and we really do! But the thought of his ashes being transferred into another urn and his ashes accidentally being spilt or tiny little fragments remaining in the plastic box, terrifies me.

When we first picked Sebastian up I was desperate to look inside, I felt we owed that to him. But as I struggled to undo the canister I looked at my hands and saw that my fingers were covered in ash. I froze and freaked out, “what was I going to do with this ash on my fingers?”, I can’t just wash my hands and have tiny little parts of him go down the drain. After what felt like an hour of me staring at my hands, I decided to gently wipe my fingertips on his beanie (it has a tiny speck of his blood stained on it already, so I feel like it is connected to him). To be honest the amount of ash was so minimal, that once I put it on his beanie you couldn’t even see it. But I felt relieved.

One day we will find the courage to go shopping for an urn and organise his transfer. We wonder whether we would buy new urns once he gets older to match his age, or whether he will always be our baby, despite being our eldest child. I guess we will always have thoughts about the “what if’s” and wonder what his interests would be or his personality would be like as the years pass. We will always be haunted by thoughts of the life he has missed. And that really hurts us. We know we need to deal with each day as it comes, and lots of people have said how much they admire our strength. But at the moment, we do not see ourselves as strong, we see ourselves as treading water to survive. We don’t even feel strong enough to select an urn for the baby we love and adore so much.

Sending our love to heaven - a letter to Sebastian

Below is the shortened version of the letter we had written for Sebastian. We read this letter at his funeral… I still read it. I still cry when reading it.

***

 To our little, courageous Sebastian

We have known you and loved you for just over 20 weeks. Our hearts have not known a truer or more precious love since you came into our lives. We are truly blessed, proud and happy to have been given you as a gift from God. The pure joy you have brought into our lives will never be replaced, forgotten or understood by anyone else but your Mummy and Daddy.

We are so sorry that you were not well, and whilst your body is so precious and small, it was fragile and weak. We pray that you are not in pain now and never had to experience it. If we could take away your sickness, we would. We have felt so helpless that we could not do more for you. If we could have bared the pain and weakness for you instead, we would.

Life is incredibly unfair and unjust and we are sorry you were affected before your life began. If we gave you this weakness or did something that hurt you, we are so very sorry. We would never want to hurt you or do anything that was not in your best interest. If you feel like we have let you down, we are sorry. There are not enough words to express how sorry we are and how much we love and miss you already.

Since learning of your prognosis, whilst you were in Mummy’s belly, we took you to lots of meaningful places. We’ve tried to show you a life of culture, great food and how much you are loved. We collected shells at the beach that we will keep forever, and have placed some with you in your resting place.

When you get to heaven go straight to your great grandmother – she will look after you until Mummy and Daddy join you again. Your Great Grandmother makes delicious apple pies and is very good at raising boys. I promise you are in good hands.

Your family whom you’ve left behind all adore you and love you so much. Please never think you were given to a family who wouldn’t love you and accept you, because we do and will never forget you.

If in the future you have siblings here on earth, they will know about you and our happiness will never be the same without you. Please, as their big brother, be their guiding star, their angel, just like you are for Mummy and Daddy.

There are so many things we want to tell you; so many stories to share; so many songs to sing to you, and so many experiences we want to give you. But, most of all, we have so much love for you that we want to show you.

We will always feel your presence with us and we will always love, cherish and remember you. You are and always will be our beautiful, little boy.

Until we meet again, stay safe and rest peacefully.

Sweet dreams our little man.

With love, forever and always,

Mummy & Daddy

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Saying our final goodbye - our Little Man's funeral

Wednesday, August 26^th 2015 | St. Michael’s Church, Baulkham Hills |11am | Father Hoekstra

I hardly slept the night before the funeral, I felt anxious and unprepared but at the same time as if I was living in a really bad nightmare – this could not be happening to us.

When morning came, we started to get ready straight away. I was feeling completely broken. I would literally wash my face, then cry, do makeup, then cry, do hair, then cry, get dress, then cry. I couldn’t help it. I couldn’t believe what we were doing today. You never really expect to ‘bury’ your child, or live life without them. You think that once you are pregnant, you will have a baby and your family will live happily ever after. I wasn’t ready to live my life without my son, and I would never be ready to farewell him.

We had opted for the funeral home to pick us up from our house so that we could travel with Sebastian to his funeral. I know it sounds ridiculous because they would have taken him 30 minutes out of the way, just so we can do this. But you would never turn up to any celebration separately from your child. We were not going to allow our son to be in the presence of family and friends for the first time, without us holding him and being a family.

The car ride was completely silent. Sebastian’s blue coffin sat in the back of the car, in the middle seat in between James and I. The entire trip I just stared at the coffin in disbelief, sobbing. I ran my hands up and down the coffin in an attempt to hug him for the final time. I knew what he looked like inside as I had seen him yesterday, I knew how comfortable the coffin was and how warm he would have been. I knew he was covered with a blanket made with love from my aunty and that his little toy bunny was keeping him company. I knew he was safe. But I couldn’t help but feel sad and sorry that he was in a box, and that family would never meet him in person, or that he would once again be taken from us to be cremated. As James and I held back tears I tried to remember everything about the coffin, it had little blue angels attached to the side and the name plate disappointingly said “Baby of Lauren – Sebastian”, why didn’t this acknowledge James as his Dad? Why did they do that? How completely unfair to put that on a plate on top of his coffin and sit it next to James on the saddest day of our lives. I wanted James’ name on that coffin. This made me angry and I apologised to both James and Sebastian that his fatherly figure, who loves him as much as I do was not acknowledged.

[above]: everything Sebastian was buried with/wearing, including the blanket my aunty made that matched the one I was given.

[below]: one of the Angels from Sebastian's coffin

When we arrived at the church, our family and friends were already inside. My beautiful cousin, Kylie, was standing at the door as she handed out the sweetest ribbons she had made for everyone to wear, she helped us with ours and went inside.

We were given instructions on where to sit and were told to take our time. James wanted to carry Sebastian down the aisle, and that is what he did. The coffin fitted perfectly in James’ arms and as I clutched his left arm, we walked down the aisle. I held another Blanket that my aunty made as well as a teddy bear that James had purchased for Sebastian when we first found out I was pregnant (the same bear that sat in his cot at the hospital).  The song Faith Hill - 'There You'll be' was playing and as we commenced walking, I couldn’t look at anyone, I just hung my head and sobbed uncontrollably. I cried so much that I could hardly breathe.

When we got to the end of the aisle, James placed Sebastian on the table. It was very pretty, had a white tablecloth and a large blue, glittery ribbon around it. Family and friends had already placed flowers at the bottom. It was beautiful, as beautiful as a coffin on a table could be. 

I covered the coffin with Sebastian’s baby blanket (it says "our little angel, Sebastian James"), and sat his teddy in front of it. My mum rested a bouquet of blue flowers on top as well as another rabbit teddy she had stumbled upon that morning when picking up the flowers.

To be honest, I cannot remember much of what the priest said. In some ways I wish we had it filmed so I could remember it. I know we prayed and the priest talked about babies who are taken too soon and now rest with Jesus as an angel. He read a little poem that we had put on the remembrance books, “an angel wrote down in the book of life my baby’s date of birth. Then, she closed the book and said ‘he is too beautiful for earth”.  I found his words comforting, I know it’s silly, but it was nice to hear someone tell my friends and family that our boy was in heaven, someone that wasn’t me.

It was then my turn to read a letter to Sebastian, it was a shortened version of the letter we had wrote to him before we knew he had passed, but were expecting it to occur at any time. The full letter was written on nice paper and signed by both of us and placed in his coffin. I didn’t think I would be able to read the letter, I had cried the entire time throughout the short service, and I could hardly breathe, let alone talk. We had planned that if I was unable to read the letter, then my mum or the priest would do so for me. James knew he wouldn’t have been able to read it without crying either. As the time to read the letter was getting closer, I was preparing (or trying to signal to the priest) to not be able to read it. However, when the time came I just stood up and read it. I don’t know what came over me, I was a mess just seconds before and suddenly I could speak. Some have suggested that Sebastian knew how much I wanted to read it to him, and he wanted to hear it from his Mum’s voice, so he had given me the strength. I like to believe this as well. James stood next to me with his arm wrapped around me. As I read the letter I would remember each feeling we felt as we wrote it, I did have to fight back tears and stop myself from losing control, and as I looked at the faces of my family and friends I just felt incredibly sad- Sad that we were all in this church for a devastating reason, sad that they did not meet the amazing boy we are crying over, and sad that our baby was taken too soon.

(I have posted my letter in the next blog, for anyone who would like to read it).

Once we finished reading the letter, we walked back to our seats. I could not walk past the coffin without acknowledging our little boy, so I leant down and kissed it before I returned to my seat.

We prayed some more and then joined together to sing Elizabeth Mitchell - 'You are my Sunshine'. The same song I had been singing to Sebastian on the last week he was alive. This was my mum’s idea and I was so glad she thought of it. It felt so perfect to have it sung to him one more time and not just sung by me, but by everyone in the church. I couldn’t get every word out as I stared at the coffin and cried, but I tried to sing. That song was so important to me.

When the funeral was coming to an end, we had one more song play before James would pick the coffin up and we would walk out of the church. The song was
Bears of Hope - 'Live among Angels' and it as given to us from the midwife when I delivered him sleeping in the hospital. The lyrics were beautiful so we had them placed inside of Sebastian’s remembrance book also. My favourite line from the song was “I know that heaven must be so beautiful because of you…whenever I see beauty I believe it is a kiss, a kiss from you”

I collected the blanket and bear from the coffin, and linked my hand in James’ arm as he carried the coffin out of the church. I sobbed. I couldn’t stop crying. It was over. We had to hand him over again to a stranger and our son would be gone forever.

Family and friends joined us outside the church, some people comforted me but I had to stand near the car, I didn’t want to miss one second of being in his presence.

We were all given a blue balloon to release. And as the car slowly moved down the driveway with our little boy resting in the back of the seat in his coffin, we walked behind it. James and I were saying to each other “this is it, he is gone”, As Sebastian was driven out of the driveway, James and I just let go of our balloons, and our family and friends who stood behind us also let go of theirs. I looked up for a second to see them all released, it was beautiful. But I could only look for a second, I turned my head back towards the car and watched as it drove Sebastian down the road and around the corner, we both said our words through a whisper, I remember James saying “goodbye little man”. He was now out of sight. I hugged James and cried. He was gone. Our beautiful baby was gone.

I turned back towards all our family and we were inundated by hugs. I am so glad everyone came to the funeral, I would not have been able to get through that moment of Sebastian being taken out of our sights without them. The comfort of being in the arms of loved ones and hearing their words, or  just crying with them meant so much to me. We were hurting, our hearts were broken and our loved ones knew how to keep us together. We are so grateful for everyone who supported us on that day and leading up to it. It would never have been as beautiful as it was without everyone’s contribution.

After thanking all our guests, we made our way to Castle Hill Country Club. James and I had originally thought we didn’t want to do this, but we are glad we did. It took our minds off our little boy who would be being cremated at the same time in the local cemetery. We put on a brave face and it wasn’t long until family and friends managed to get us to smile. In fact, I didn’t want to be there at first, I wanted to be in bed curled up in a ball and crying. But my cousin, Kylie, showed me a photo she had taken during the balloon release. You can’t see any balloons, but you can see a little blue orb surrounded by a softer purple orb. This was all the proof we needed that Sebastian was watching us as we sent the balloons to heaven.

The picture made us feel at peace, and gave us strength to get through the afternoon. When we finally did leave the venue, we again saw two rabbits – ‘a kiss of beauty’ – like the song had said.

We arrived home to a beautiful bunch of flowers, a gift from a dear high school friend and her mum, which made us smile.

However, as it got dark the silence in our house became deafening, there are no cries from a baby, our phones would not ring and we just laid on the bed, numb. It was all over, but our arms were still empty, we just wanted to have Sebastian home with us, even if it was his ashes.

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[Below]: Sebastian's remembrance book and the ribbons that Kylie made. The butterfly was attached to one of the flowers from my cousin. Some people didn't realise that on the second page was Sebastian's footprint.

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 Links to the songs & lyrics from Sebastian's funeral (strongly recommend listening to them)

Faith Hill - 'There You'll be'

Elizabeth Mitchell - 'You are my Sunshine'

Bears of Hope - 'Live among Angels'

Seeing Sebastian again

When we were given the opportunity to see Sebastian again at the funeral home, I was excited! I had not planned on seeing him again, and to be honest I did not think I would be given the opportunity. So to have it on the table as an option, I was not going to miss it! Even now as I look back on this afternoon to write about, I can’t help but cry. You just don’t appreciate the love you have for someone until they are unfairly taken away from you. The pain is real, but I am blessed to have been given this time with him, something I will never forget.

I understand that some people would choose not to see their baby again, as seeing a lifeless body that has started decomposing can be incredibly difficult to deal with, especially as you are already grieving and most likely have a wonderful memory in your mind from the last time you laid on eyes on your baby. This is how James felt. He didn’t want to be confronted with or left with an image of Sebastian of his body no longer as it was when he saw him in the hospital. We had great fondness to how he was, and we will never forget that great big smile he had on his face. I completely understood where he was coming from and we accepted that we each had different ways we needed to deal with it. So, as James stayed home sitting amongst all of Sebastian’s belongings, I headed off to see my little man.

Both my mum and dad came with me for this event, they had similar ideas to James and were preparing for the worst when they did see Sebastian. But their desire to support me and ensure that I would get to and from the funeral home safely outweighed their own hesitations. They put their feelings of grief for their grandson on the backburner as they supported me to say goodbye.

We arrived at the funeral home and we were taken straight into the ‘viewing room’, where a large table was against one side of the room. It was covered in a white cloth and had some candles burning. In the middle of the table was Sebastian’s tiny blue coffin laying open with its lid against the wall behind it. I wasn’t prepared for this, I guess in my head I was picturing him in the same hospital cot he was in 8 days ago. I walked over to the coffin and peeped inside. He was wearing everything that we had packed for him, he sat in the middle of a beautiful white satin sheet and was wrapped in the blanket my aunty had made for him, along with her gift of a white beanie. He looked so precious and to me he was still perfect. The funeral director told me that I could pick him up, and with excitement I did straight away. She left the room and I sat with him on the lounge with my parents next to me. I talked to him, cradled him and kissed him. I had been waiting for this moment and it was so worth it.

(Below: This is the inside of the coffin without Sebastian in it (bunny from dad and step mum at the hospital, blanket made by my aunty, and the letter we wrote for him with a little box containing the shells we collected))

Despite his appearances looking different, I could still see that it was him and I honestly did not care that his body had changed. He was a lot smaller than he was 8 days ago, and his body was flatter due to the autopsy (you can read about this in a later post), his skin had started to peel in some sections and his body was covered so we couldn’t see what his remains looked like. I couldn’t help myself though, I had to see his little hands and feet one more time. So, I unwrapped him and had a look. His body was so different and due to the decomposure he had plastic wrapped around his body to help preserve him. It was a little confronting to see, but I insisted on taking photos and making sure his feet were warm, my mum then wrapped him back up.

His face had been ‘painted’ with makeup by the funeral home and his mouth that once had a cheeky smile was now sealed closed (by internal stitches I am assuming) with his tongue only peeping out a little, his little eyes lids were slightly parted and we could for once look into his eyes with admiration. I understood why the funeral home had to colour him to stop me from becoming upset with the way his body had changed to, however I honestly didn’t mind what he would look like and if anything, I think it allowed me to grieve better as I could now see that he was really gone and that ‘no I can’t just have him preserved and bring his body home how it was in the hospital’. So it was an important step for me to accept what had happened and to come to terms with it a little better. But I was still a little angry that the funeral director had tried to talk me out of this moment just a day ago.  This was our son, our creation and I would love him and adore him no matter what he looked like…did she not understand that!?

My parents each had a turn at holding him and talking to him. They each got a photo holding our little boy, which they treasure. However, they eventually left the room and left me to have time with my son. I thought about what I would say and I continued to hold him for as long as I could. When I eventually returned him to his resting place, I would sit with my chin on the edge of the coffin and stare at him whilst weeping. I needed to tell him everything I could think of and let him know again that I loved him and even though his Dad was not there, he loved him too and that we hoped he would understand.

(Above: Sebastian with his Nanna; Below: Sebastian with his Poppy)

(Below: me talking to Sebastian) 

This time I would be expected to walk away from Sebastian and leave him behind with more strangers. I hated this feeling and even though before we left I had gone into another room to cry and be with my parents whilst I watched his coffin through the hallway, from the room opposite to where he was, I had to go in one more time and say goodbye. We all did it, we did it together and we took turns. I felt OK with leaving and this time my final words were “I love you, sweet dreams baby boy”

We left and as my mum drove me back to her house, we drove around to the front of the funeral home where I stared into the window of the room Sebastian was in. I softly said one more goodbye to him and with a glimpse of hope reminded myself “I will see you tomorrow baby boy”

When I drove home from my mum’s house that afternoon, I cried. I actually sobbed. I was so incredibly sad that he was gone, it had become real and I was missing him like crazy, but I couldn’t help be grateful for seeing him again. I would never regret this day and even though I know he is with me in spirit and looking over me, it was the last time I would see his body in this form until we meet again one day in heaven.

Since you've been gone: our first week without you

The days following hospital were emotionally exhausting, and despite receiving numerous gifts and bouquets of flowers (I think we counted eleven in total), I was feeling completely numb. I was blaming myself for Sebastian’s passing and contemplating everything I did during pregnancy – was it because I wore jeans that were too tight for my emerging belly? Or was it because I had that one serving of soft-served ice cream in a milkshake? Whatever it was, I knew I was the reason. I just had to await the autopsy results to prove it.

Meanwhile, life went on for everyone. We received about 10 messages a day from family, friends and colleagues. We did not have a day where we were left alone, someone was constantly arriving at our door and if they didn’t, we had to go somewhere. Some of those things were mundane (like buying cat food), some were significant like registering Sebastian’s birth and finally changing my surname so I shared it with my son and husband, and others  were really hard – planning my baby boy’s funeral.

When we should be negotiating a room colour, or purchasing some nice sheets for his bassinet, we were instead being shown two different types of coffins. One looked like a box put together by me in year 10 woodwork, and the other, albeit still a box, had more shape and some patterns on it. Of course, we chose the latter and James decided we should get it in a baby blue colour. I requested for a balloon release and selected the church in which I was baptised in when I was a child. It sounds silly, but everything had to be perfect. It was the only thing we could plan where Sebastian’s body would actually be present. It was the only event that would solely be about him – I had to make sure everything was as good as it can be.

During the planning session, 3 days after I delivered him, we were asked by the funeral director if we would like to see Sebastian again for a “viewing” (what a horrible word, like he is an exhibit). I looked at James and my Mum with a glimpse of hope – this would help me have closure, if I could just kiss his little cheek one more time, get one more photo to look at and just know that he is OK. My mum and my husband warned me that he wouldn’t look like he did at the hospital and I would have to prepare myself, I said I would think about it. Within an hour of the meeting finishing it was all I could think of. If I could just be there for Sebastian, whenever I was able to, I would. If it would allow me to show him that I cared about him and miss him so much, then I would do it. I decided that I would and I harassed my mum to call the funeral home back constantly until it was confirmed. It is what got me through the next couple of days before I could see him- I was literally counting down the hours, I couldn’t wait to hold him again for what would be the final time.

That same day I had emailed the Genetic counsellor from the children’s hospital and she informed me that Sebastian’s body arrived at 8am the following morning after delivering him (I felt relieved that the hospital kept to their word and that he had left before I did). I was panicked that I would never get the blanket and beanie he wore on the Monday night, but the counsellor was able to locate the beanie and ensure it was given to the funeral home (it now sits on a shelf in my bedroom). She also informed me that Sebastian’s body would be available for release the very next day as the autopsy was complete. I was relieved – it was the worst feeling sitting at home and not knowing when it would occur (you wouldn’t let your child have an operation and not sit in the waiting room – this was no different to me), and to know he would be home soon was even more exciting. I felt empty without having him with me.

***

The next couple of days went by, we didn’t really do anything – It didn’t feel right to do anything. The only place we went was back to our favourite picnic spot. My beautiful husband knew what significance this place had for me and as I was in tears all day, he ordered a pizza and off we went. It was dark when we were there, and despite a lot of families being present, I could hide in the darkness with small glimpses of a smile over what I believed were little signs from Sebastian that he was OK  (you will have to read about it in a later post).

***

The following Monday, one week since Sebastian was born, we were buying an outfit to wear to his funeral (I was insisting I would buy a blue dress) and then attending the venue for his wake to ensure everything was finalised. When I was buying the blue dress, I dreaded the sales lady asking me their rehearsed line, “was this for a special occasion” as I knew I would not be able to hold back the tears. But, at the same time I wanted to tell her, I wanted to tell her that this was the most special and saddest occasion I have ever been to as it was my son’s funeral. But I didn’t, she never asked. Was probably a good thing as it would have been awkward. I just hated that the world was moving forward and going about not knowing what tragedy had happened.

On the same day, when my emotions were overwhelmed, I had passed what looked like a very large amount of tissue, in fact it was later confirmed that it was part of the umbilical cord. Freaked out, I called the birthing unit and spoke to a midwife – she instructed me to go to my GP or emergency straight away (I went to my GP, showed her a photo of what I passed and she sent me to the hospital).

At the same time, the funeral home called my mum and advised her that it would not be a good idea for me to see Sebastian. She said that his body was quite decomposed and that it would not be in my best interest. This made me so angry and sad at the same time. Who was she to tell me I could not see my son!? This was my last opportunity to hold him. This was what was getting me through my days. This was the only glimmer of hope I could clutch on to. And why tell me this today when I have to go to emergency? My mum told me that she would do whatever I wanted, and my husband told me that he couldn’t bring himself to see him like that, but advised me to go as he knew how important it was for me, “he will probably look the same, the staff probably haven’t seen a little baby whose body looked the way it did”, I knew he was right and as we were leaving when I was still thinking about my answer, I saw a tiny little rabbit in the carpark near the door to the venue. Another rabbit!! I knew straight away that I was going to see him. And that was that. It was booked in, I would see him tomorrow!

***

My trip to emergency was nothing too alarming; however it was surreal to be there again one week on from delivering Sebastian just upstairs from where I sat. I was so scared that they would need to give me surgery to remove retained material and I would be placed in the women’s health ward again, and not be released until after Sebastian’s funeral. I had been on antibiotics so the usual symptoms were not present, but I was prepared to skip my own medical needs so that I could see my little boy the next day and then farewell him at his funeral the day after…

They took me straight in when we arrived and inserted a cannula into my arm as I had low blood pressure when I stood up. Thankfully, they sent me home and told me I had to come back for an ultrasound the next day (which I didn’t do until after the funeral, 3 days later, in case the results relied on me having to have surgery).   Whilst I was scared about needing a D&C to remove the material in the later days, my main concern was to get through the next 48 hours. The next day I had severe cramps and some bleeding and we were concerned that I needed to go back to the hospital, but I just took some pain killers and went to bed – nothing was going to stop me from seeing my boy! (Just for the record, the scan came back with only a small amount left and therefore did not require surgery).

***

I had managed to get through my first week as an empty-handed mum. It was such a devastating week with so much going on and so many new experiences we would have to become accustomed to. For instance, when we were in emergency a lady had asked us about our son and what we named him, it was in front of a room of patients and nurses. I just looked at James in shock, I wasn’t prepared to be asked. James answered “He didn’t make it”,  and the lady apologised and I informed her his name was Sebastian. At the same time the nurse gave me a sorrowful look, she was already aware of the situation, but could tell how hard it was for us to answer.

We wondered how we would answer questions in the future regarding whether we had any children. It is a hard question because it will make a normal situation turn awkward if we told them the truth that we have a son in heaven, but if I am to answer and say I don’t have any, I would be betraying Sebastian and only lying to myself. This question hasn’t been asked of me yet, but I plan on always replying with “just the one boy, he is in heaven”.

Saying hello and goodbye - part 3

After Sebastian had left the room, we sat in silence. We would never feel whole again, we felt like completely different people who had just experienced a life changing moment. 

I showered and got in my pyjamas as I was informed I had to remain in hospital for 24 hours due to my temperature. It didn't bother me though as I wanted to be in the same building as Sebastian for his first night  alone. 

Bronwyn, the amazing midwife had opted to work overtime and stay for as long as she could to support us. She is an amazingly strong woman to have supported us through our journey along with the other mums-to-be screaming and yelling as they delivered their babies, (however their births ended with a healthy baby and crying to me was soul destroying). One mother though who our midwife was also working with  really annoyed us, she was under the influence of drugs and obviously had an addiction problem, along with her team of supporters. She yelled and abused the midwives and made the unit unsettled. She had her baby removed by the authorities and was screaming "I want my baby back", when we heard this James and I looked at each other and I said "lady, you have no idea" 

When we heard what was happening next door I said to the midwife, "it's unfair isn't it? It's unfair that she gets a healthy baby and we really want Sebastian more than life itself, but we can't have him." I said this with tears in my eyes and the midwife looked at me, unable to say a word but just give a very sad and sorrowful look as she nodded lovingly. I could tell she was trying to not be emotionally invested. 

Bronwyn made sure to give us as much support as we needed. She provided us with little memory books of all Sebastian's  information. She gave us a Bears of Hope Package which contained lots of little items to support us, including a bear donated by another family who had lost their daughter in 2012. Bronwyn would also call me two days later to provide me with after care tips and to help locate the blanket and beanie Sebastian was wearing so I could keep them forever. She was an amazing midwife who was in the job for the right reasons (we hope she got her gift we left her on a return visit).  

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It had been suggested that I return to the women's health ward to sleep that night as being around pregnant women and their babies would be difficult for me. I agreed and after signing all the autopsy documents (which was a difficult decision) I was supported back to the ward. 

They had organised a staff member to take me to the ward in a wheelchair. At this stage another midwife was supporting me. The male staff member said to the midwife " I was told I was picking up a lady who just gave birth, where is the baby?". My heart sunk and I looked away, it had begun I had no physical child to show what I had gone through, my eyes were sore from crying but a tear was still produced.  If only I could show him the emotional scars I had endured. The midwife took him away and explained the situation. They retuned and supported me to the ward with James carrying my bags.

When we arrived at the ward it was explained that I was meant to have my own room but there were none available, so I had to share with another lady. James was invited to stay the night but I told him he could leave once I was settled, it was nearing 2am and I knew he would prefer to be in his own bed. As the midwife wished me well I started to cry again, she reassured me saying "I will see you next time with a healthy baby up in the maternity ward" I nodded and wondered if there would be a next time, and that despite the optimistic sentiment I really just wanted Sebastian. 

James stayed another 10 minutes and set everything up for me. Before he went home I made him promise he will come back first thing in the morning as visiting hours did not apply to him. He agreed and left. I didn't stay awake long, but I only slept 2 hours. 

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With the curtains closed I laid in bed sobbing as I recounted the last 24 hours. I watched out the window and prayed Sebastian was ok. I felt like a zombie as I moved around the ward that morning, I showed no emotion and I didn't care about what was going on around me. I did see one pregnant woman in bed near the bathroom, she was being induced and was at full term. I couldn't help myself, I just stared at her belly as I fought back tears. She did look at me but I just quietly prayed she wouldn't have to go through what I just did. 

As I was told that Sebastian would be taken to the children's hospital at Westmead for his autopsy at 8am that morning, I stood at the window of my room just in case I could catch a glimpse of him being driven past. I never did get to see him go past, but I needed to believe he had left. 

The rest of the morning consisted of me lying in bed crying. I had never experienced a heart break, but I knew that is what I was feeling. 

I did have a nurse come In who had obviously not read my file or observed the symbolic butterfly on its cover...Despite me sitting on the bed crying she pulled back the curtains and exposed me to the other patients, she demanded i get out of bed so she could make it. I refused and asked to be left alone but she kept insisting. I sat and continued crying and shaking my head, I had only been in bed for 4 hours and I was not getting out anytime soon. The woman in the bed next to me yelled at her to leave me alone, and she did.. But only for an hour. 

I messaged James to hurry up and come, I didn't want to be alone anymore when I already felt so empty inside. He was still asleep and had slept through his alarms - a much needed sleep. But regardless he was at my bedside within 30 minutes. 

I had started to fill out the forms to register Sebastian's birth when the evil nurse returned.. "Oh good you're not crying anymore. Why were you crying? It's not time for crying. You should stop crying", speechless and unable to look at her I just allowed her to continue collecting my obs info, but thankfully she stopped when the lady in the bed next to me once again yelled "mind your own business, she doesn't have to tell you". The nurse rolled her eyes and left. I looked at James shocked and he shook his head. I am so grateful for the lady who I shared the room with, I wish I spoke to her more. She had closed the curtain back up for me and gave me flowers she had received as a gift. When I thanked her for standing up for me she said "oh don't worry I was about to punch her in the head" I couldn't help but smile, I had no idea who this lady was or what she had heard about me but she was my guardian that day. 

After having to stay in until 1pm to ensure my temperature was down, I couldn't wait to go home. We had met with the social workers, more midwives and doctors and I was given more medication and prescriptions - but the time came where I was finally allowed home. 

As I walked out of the ward and then out of the hospital, I cried. It was all over and I was returning to an empty and quiet home. It was not how I had pictured the "going home" routine and I just prayed that Sebastian had already left the hospital. I couldn't stand the idea of me walking out and leaving him (it was later confirmed that he did leave at 8am and he left wearing his blue beanie so his little head was warm and covered up until he would arrive at the funeral home one week later). 

We drove home in silence as I sobbed for my little boy. There should have been a baby seat in the back of the car and we should have driven ridiculously slow to ensure he got home safely, but there wasn't and we were left with little knowledge or closure of where his precious little body was now. We hoped that those who would be privileged to meet his body over the next few days did not gaze at his imperfections with disgust, and instead met him with as much love and care that any other baby would be met with. 

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As a side note to this story (and I will explain more in a later post) but to read more about the Bears of Hope package we received and to help us provide support to other families in the same situation, please visit: 

http://hugsforhope.gofundraise.com.au/page/OMearaL

Saying hello and goodbye - part 2

An hour had passed when the midwife returned to the room pushing the hospital's bassinet/cot. I could see a tiny baby in it and she introduced us to our angel. I couldn't have cried if I tried when I laid eyes on him, he was so small and precious. I felt so much love and pride the moment I saw him I just had to smile and "oooh" and "ahhh". 

Sebastian weighed a tiny 140g, and even though the midwife advised not to hold him as he is very fragile, I picked him up and he fit perfectly in my hands (he was the same length as a Samsung Galaxy due to his shortened limbs). His eyes were closed and he had the tiniest little ears and nose you could ever imagine. But my favourite part was his mouth. It was open and his tongue could be seen. The sides of his lips had not completely joined so he had a gorgeous, open mouthed cheeky smile. This was the same reassuringly smile I saw in the ultrasounds a week earlier; this smile was what got me through our anniversary weekend and this smile I knew would get me through the rest of my life. I had never seen anything look so peaceful, cheekily happy and beautiful in such a small package. 

His skin was a little translucent, and bloodshot in some areas, it was soft but sticky (for lack of a better word) and under the gorgeous blankets was his little body wrapped in plastic (to prevent the blankets from sticking to him and peeling skin).   His arms were very short, and his hands faced backwards with his fore arms bent in the middle. It looked so incredibly painful and his legs were not any better. They were short and also bent in places that wouldn't normally bend. They were constricted and curled up as if he was crossing his legs - I was Informed that this is why I never felt him kick when he was inside me as it was likely both his arms and legs were restrained by his muscles and ill formed bones and permanently were in this position. Just like his left hip bone, his left leg was broken and his bone protruded the skin - I prayed he felt no pain and that this occurred after he passed. 

He had gorgeous little hands and feet with the tiniest of nails on the end of each finger and toe. His fingers were an identical shape to his dad's, which we all loved and were fascinated by. The midwife was not able to get a handprint due to his wrists forcing his hands backwards and being too awkward to Manoeuvre without breaking. However we got one foot print, you can see it here: 

His chest was tiny and his abdomen was very large and round. We could see his tiny ribs through his skin as they sat tightly against the bulging abdomen. 

His head was covered with a tiny blue beanie that was donated to the hospital, and underneath we were Warned that his head had been damaged. The lack of ossification of his skull meant that his head was not protected and the skin had split during delivery. I did not take his beanie completely off as based on the mucus and particles on the inside of his beanie we were sure that his brain would be exposed - something we weren't prepared to look at. 

We spent nearly 8 hours with him that night, we sat mostly alone in the room talking to him, taking photos of him, holding him, kissing him and insisting he knew he was loved. We sang him a song, apologised to him and even explained to him about what would happen to his body in the next few days at his autopsy. We begged him to be not afraid. 

James and I were both provided with dinner and we sat next to Sebastian's lifeless body and had what we referred to as our first and last family dinner. We couldn't really stomach any food, but it was important to us that we still showed him what our family would be like with him. We talked to him about our hopes and dreams, and who in heaven he could trust.

The weight of the whole situation had really hit James, and as I sat stroking Sebastian's body, smiling at him and thanking him for making me a better person, James couldn't articulate any words, he sat crying and shaking his head, the only thing he could say was "this is my little boy, he is my little guy...". We hugged each other and cried over Sebastian's body. 

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My family later came in to meet Sebastian. They each said hello as they fought back tears. They each tried to be strong but they were all hurting. My brother and his wife also came to the hospital and were just as sad over the loss as all of us. 

They all spoke to Sebastian and took photos of us holding him. We each told him again how much we loved him and how special he was, especially being the first grandchild and nephew in the family. 

My dad gave him a tiny bunny rabbit and we sat it next to the bear James had previously bought. We explained to dad why a rabbit was the perfect toy given our trip to the beach 2 days prior.

(The third bear was donated to us by another family, you can read about it in the next post).

One by one our family left, they each said their goodbyes and wished him well on his journey to heaven. 

We organised the hospital's priest to come and visit, he arrived at about 10.30pm that night. It was just as I had started to breakdown and sob as the reality hit me that this was my little boy and i will never see him again. The priest blessed Sebastian and we each stood around the cot and said a prayer, blessing his little forehead with our fingers whilst cuddling each other for comfort. The priest asked for God to give James and I strength as moving forward we would need it.. 

Time had gone so quickly that evening and before we knew it, it was nearing midnight. I couldn't believe my time with Sebastian was nearly over, I felt like it was too soon. James and I tried to fight our tiredness as we were determined to stay with him for as long as possible, but we eventually pressed the buzzer to inform the midwife she could now take him away. We wanted to stay with him longer but we could barely keep our eyes open. I had spent that whole evening sitting with my chin against the edge of the cot and admiring and remembering every little bit about him  , I would never be ready to say goodbye. But as the midwife took him away, I realised he was gone. Tears rolled down my cheeks and I struggled to breathe as I whispered for the last time "I'm sorry Sebastian, I love you" as I clutched James in my arms and not taking my eyes off Sebastian as he was wheeled out of the room.