Saying hello and goodbye - Part 1

Monday 17th August, 2015 arrived. In the past week we had attended three different hospitals and 5 different appointments. We could no longer hear his heartbeat on the Doppler, our eyes tired from crying and our bodies feeling numb, our worst fears had been confirmed and i was induced within 90 minutes after arriving at my local hospital. 

I'm not really sure how to describe labour or the process of being induced. But I will, because one day a mother in the same position as me may be reading this and may be scared or feeling anxious about what to expect. It's not just any labour and delivery, it's the delivery of a baby way too small and early to survive in the world, the delivery of a baby born sleeping who had passed away in the comfort of their mummy's tummy as they listen to her heartbeat and the lovingly words of his parents. 

We were originally sent to a women's health ward within the hospital but were left waiting in a kitchenette as they hurriedly tried to locate a bed for me (I remember standing outside the kitchenette as two male workers stood inside and discussed their working conditions - it would seem the world was still moving forward, whilst we stood still). 

Eventually we were informed that the procedure was going to have to be started in the birthing unit due to no beds being available in the ward. We understood this and to be honest preferred the privacy and getting to know the amazing midwife who would deliver our boy. 

We were in birthing suite 3 and our midwife, Bronwyn introduced herself lovingly. This is a photo of a quote that was on the wall of the room I would deliver Sebastian in: 

I was induced by a doctor who inserted two tablets internally in me at 8.30am. I had to lay still and flat for the next half hour. I was told that I could be waiting for a long time and that every three hours from this point, they would provide me with another dose until he arrived. I suddenly started getting really bad cramps about 45 minutes after that. It was worse than period cramps, but I think it was worse because it was constant. Not to mention my heart was breaking into a million little pieces as the reality of the situation began to hit me. I took one last photo of me being pregnant, the last day Sebastian's body spent in my tummy:

About an hour later, my aunty, mum and her partner arrived. Not long after that my dad and step mum came too. They all sat in the room with me and James. They were forced to make small talk until the labour progressed whilst I frequented the bathroom due to a side effect of the medication. 

My Aunty informed the midwife that my cramps had started and she asked me to rate them out of 10. I found this really hard because they were worse than I had ever experienced but I knew they were nothing to what was to come and I wasn't sure whether it was as bad as it was because it came on so suddenly and without warning. I gave it a 7 and the midwife left to organise a dose of pethidine for me (I was able to choose pain medication as there was no risk to our baby any more, however my selection was limited as I'm allergic to morphine and I really hadn't done any research on my options or attended any birthing classes yet - let's remember I was only 20w2d at the time). 

It would be another hour or so before the pethidine would be administered and to be honest I can't remember whether I was given that before or after the second dose of the other medication, but they both were administered at some point and I became really sleepy in between the cramps. The cramps were much stronger after that. 

Lunch had arrived at 12 and I couldn't eat, my cramps were too bad and I had no appetite, especially for hospital food (it was baked veggies and roast beef with delicious mango mousse for dessert  - which I ate at 2am). My family took turns at getting something to eat as i laid in the double bed with my husband lying next to me who drifted in and out of sleep (we hadn't been sleeping very well at all this week, so I let him rest). My cramps were getting worse and I found a heat pack really helpful. However I had a fever and the midwife was becoming concerned as my temperature reached 39 and I was shivering. My parents took turns sitting next to me, holding my hand and stroking my head. In between contractions I would cry over what was happening and I would keep telling Sebastian how much I loved him and how sorry I was. By this stage i was feeling numb from the drugs and the midwife was giving me antibiotics and taking blood tests to check me for infection. 

By 1.30pm I was declared as in labour and the midwife started prepping the room and warning me about feeling like I needed to push or use the toilet. I was given gas to help with the pain - I would struggle with this as it dried my mouth and lips and didn't feel like it helped that much - when I look back I realise the times it didn't work was because I wasn't inhaling hard enough or was breathing too fast on it.

 My family were instructed to buzz the midwife back if these symptoms started.. After a few false alarms, she was eventually buzzed back and supported me to use the toilet (well a bed pan on top of the toilet) so she could see what would come out - I believe my water had broken at this point as a gush of liquid filled the pan..

The sensation to push came not long after (although I wouldn't say it was what I expected, it was more so if I started pushing I felt relieved from the cramps, it's not that I actually felt like pushing myself) and I alerted the midwife that something had come out. By this stage my dad, step mum and mums partner had left the room and I was surrounded by my husband, mum and aunty. We had previously discussed that it was just my husband who was to be in the room, but honestly we were both upset and I didn't care if they stayed anymore (my husband was glad they stayed as he didn't know how to support me whilst keeping his own anxieties in check). A second midwife had also appeared to support Bronwyn and I was given another dose of pethidine (which is a needle in your butt cheek -FYI)

So what came out? I wasn't sure as I had no idea how big the baby would be at this early in gestation, it felt significant and with the looks the midwives were giving each other and the amount of time they assessed what it was, I became a little concerned (and my husband had a panicked look on his face, he was really worried about something happening to me, especially as we were given statistics of women dying during labour previously). It turns out it was part of the umbilical chord. It had broken inside and parts of it had come out before Sebastian. It was clear that Sebastian had definitely passed as he was no longer receiving oxygen. This was repeated a couple of times and eventually I just kept pushing. 

The room was pretty quiet, my mum and aunty were telling me I am ok and explained what was happening. They held the gas close to my mouth as I laid with my eyes closed holding my husbands hand. I remember thinking how much I wish this wasn't true and how much I wish I could just have another week being pregnant. I hated that I was in this position. 

At 3.24pm, the exact same time I was born, I gave one more push and little Sebastian came out and entered the world sleeping. He didn't come out in a slow, rehearsed way you see in the movies with full term sized babies, he sort of shot out and landed on the bed between my legs, splashing the midwives with amniotic fluid. You never see a baby get delivered in a movie where there is no crying.. Delivering a baby in silence is more heartbreaking than anything I can remember.

A few minutes passed and I couldn't see what was going on, the room was completely silent as i tried to sit up and look. I watched the faces of my family as they looked at Sebastian's lifeless body put into a little dish and covered with a cloth. Their eyes filled with tears, they tried to reassure me that I did well and that it was over and he was ok. But I knew they had seen him, I knew their hearts were broken as they watched their son, grandson and great nephew leave the room with the midwife. I felt pretty empty. I had envisioned my son being born and having my husband cut the chord and  me nursing him on my heart as we said hello. But none of that was able to happen and the midwife warned me he had suffered some trauma to his head.  

The cramps came to a complete stop and the midwife put a needle in my leg to ensure the placenta came out. It was only the midwife and my husband now in the room as my family decided to wait outside as I was prepped for surgery to remove the stubborn placenta. My temperature was still high and the midwife's concern now was my health and safety.  I really didn't want surgery, I wanted to meet and spend as much time with my son before they would have to take him away.

Thankfully, 45 minutes later the placenta arrived. But I still had to await any more retained material due to the chord being in pieces. I was eventually cleared from needing surgery as everything appeared in tact - thank god! And now I just had to wait for the midwife to prepare Sebastian's body so that we could meet him for the first and last time.

The room emptied and James and I were left for an hour lying on the bed reflecting on everything that had just happened. I tried to prepare myself as best as I could, I needed to look perfect to meet my little man and all I wanted at that point was to hold him and tell him how much we love him. 

Spending quality time with our son

It would be 19 days since we said hello and goodbye to our gorgeous boy when Father's Day arrived. Normally we would have brunch with my Dad, step mum and siblings. But this year, it didn't seem right. We couldn't even watch Father's Day ads on TV - at one point I would mute them or change the station. This Father's Day would be a childless day to celebrate everything my gorgeous husband has done in the short time we had Sebastian...except when they day arrived it was too much. We just went about the day like it wasn't significant. I gave James (and my dad received one too after) a key ring that read "daddy of an angel, Sebastian James 17.08.15" (my Dads read the same but referred to him as "Poppy of an angel").

Father's Day gave us some time to reflect on our favourite pregnancy moments - we had been to the ice hockey (USA vs Canada), we had been to all our favourite shops and restaurants, spent time with loved family and friends, all of which we believe Sebastian was able to sense, feel or hear. 

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After being told of Sebastian's prognosis and how little the amount of time we had left being pregnant with him, we decided to show Sebastian everything we had planned to show him as he grew up. obviously we couldn't take him to Hawaii where we got married or to Disney World but we could take him to our local favourite spots, so that's what we did. 

One of the outings was to our favourite picnic and New Years spots, we sat and watched the ferries comes past and took photos of my belly in the same spot we had taken photos of us when we first met. We walked around the boat docks and talked to him about the different boats and the fish we could see in the water, we showed him houses that we had admired and told him stories about previous visits there. It sounds lame, but we felt better knowing that we went here with him and when we return (which we have since his passing) we could feel a little more connected to him. 

That night we went to Matilda the Musical (James had already purchased the tickets prior for my birthday, it was just fitting it was on that night, especially as it is a kid's musical). The first scene was the heavily pregnant mother in a maternity ward and saying she didn't want to have the baby and begging the doctors to take it away.. This made me visibly upset and I started sobbing. James held my hand until the scene was over, but I couldn't help start to think about all the people who have unwanted pregnancies or the poor children who grow up in abusive or drug affected families - how did they get healthy babies!?

(It's not that I would swap Sebastian with them, I was just angry at the universe for making Sebastian so ill -why did it have to pick on our little boy!?)

I tried to focus on the musical as much as possible as I wanted Sebastian to enjoy it (I also made sure he got to try some delicious food s and desserts).

The next day we went to our favourite beach. It was too cold to swim, but we just walked the length of it and explored the rock pools (which we hadn't done before). Again we talked to Sebastian about what we could see and smell, we told him about the beach and how we dreamed of bringing him here on warm summer days. We took some more photos and collected some shells (some for us to keep and others to send with him to his resting place). As we returned to our car on a slightly grassed hill we saw two rabbits. We had never seen rabbits at a beach before, so we were a little amazed at them. We don't know if Sebastian had passed away yet, and we will never know. However, we believe that these two rabbits (one for me and the other for James) were signs that we would be OK. 

For the rest of the remaining days, we still did things and went to places that were meaningful to us. I began singing (the song choice came from nowhere) "you are my sunshine" and I found a really nice version of it by Elizabeth Mitchell on YouTube, so I would hold my phone against my belly and play it to him. We were a complete mess that week. We would cry non stop and pray that this was all a bad dream. We hardly ate any food and it wasn't unusual for me to stay in bed and read aloud all the children's books we had purchased for him. I would cuddle the bear James had bought him many weeks prior and cover myself in the blanket that my aunty made for us to remember him. I would sing twinkle twinkle little star and talk to him about how sorry we were and how much we love him. We wrote down all our feelings in a letter to him which we would end up reading part of at his funeral and put with him in his resting place also. 

In a panicked moment I also bought an expensive but quick delivery of a home Doppler, I was able to use this to hear his heartbeat and record it for the last time. I only used it twice, the third time, I couldn't find his heartbeat after a while so decided to stop trying... I would never hear his heartbeat again. 

Specialist Support

When I look back at my pregnancy with Sebastian, I feel so much guilt for joking about "adoption being easier than pregnancy" when I was enduring all-day-morning sickness, or how I insisted that I wanted a girl when people suggested "I bet you just want a healthy baby"...

How I wish I could rewind to those days and pray that my little baby boy would be healthy. It never crossed my mind that he wouldn't be. 

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Monday, 10/8/15, 7.50am, we arrived at the Foetal Welfare Unit within the antenatal clinic at Westmead hospital.

The tertiary scan was being completed and I found it difficult to watch. I remember looking away from the screen during the second half of it as the sonographer and doctor discussed what they were seeing. All I remember from that scan was Sebastian's gorgeous little foot.. 5 perfect little toes (a picture I never got printed or invited to keep).

In some ways I regret not looking at the screen the whole time, but I also remember watching my husband as he too avoided it and just stared at the floor. I could see his heart break.

The doctor and sonographer were lovely, but we just couldn't bring ourselves to look at our baby boy as the worst of his prognosis started unravelling (this is not because we didn't want to, but because we were trying to hold ourselves together and seeing him inside my belly moving around but being told he is not ok, is hard to comprehend). 

"Your baby has very poor bone density" the doctor explained, "his little bones are brittle, not forming and bowed". His lower spine and skull was also weak and each had some parts either missing or only faintly displayed. Feeling at fault already I told them, "this doesn't surprise me as I have low bone density too", with a disappointed look on their faces the sonographer said "yes, but you're an adult" - there we go, she just pushed me to grasp the reality that our precious little boy's health was in serious trouble. 

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"Will you consider an amniocenteses?" The doctor asked, which I nervously agreed to. 

My friend had already told me about this test, except she promised me it wasn't that bad (I later learned she lied so I wasn't scared). The test involves a large needle in your stomach that goes through your uterus and retrieves some amino fluid. At the same time they complete an ultrasound to observe the baby's position. There are some risks associated with this procedure, including miscarriage, and I will be honest with you, the test stings a little and is quite uncomfortable and slightly painful as it enters your uterus. But it provides very accurate chromosome readings.

I could not watch the test be complete, I looked away and watched my husband observing what was going on. 

During the test you have to stay incredibly still to ensure the baby's safety. This was hard as I felt the needle enter my uterus, I tensed my stomach and pushed my hips up in the air. The midwife and doctor had to hold me still...needless to say, I was so glad when it was over! 

One of the obstetricians (2 were present in the room) spoke to us about what they believed Sebastian had and informed us that he did, indeed have a lethal form of Skeletal Dysplasia (let's just sit for a minute in silence and consider the ugliness of the word "lethal" to describe a diagnosis for a Baby). In one word we were being told that our little boy was expected to die.

The doctor left us with "you don't need to decide today, but we will need you to consider whether you want to interrupt the pregnancy". Tears welling up in our eyes, we agreed to consider our options and talk to them in a couple of days after the geneticist reviewed Sebastian. 

What did I need to do when I left the appointment? Get some chocolate, cry hysterically and get a hug from mum. So that's what we did. 

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Later that afternoon the genetic counsellor from children's hospital at Westmead called us. We weren't expecting to hear from them until we received the amino results, but they didn't think there was much point. They collected our family history over the phone and made an appointment with us the same day. ..so off we went.

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I had spent a fair amount of time at the children's hospital as a teenager so was not as anxious about this appointment as I had always remembered feeling supported and comfortable there. That same sense of feeling was present at our appointment. 

As we walked into the hospital we saw plenty of different children who had varying degrees of disability. We spoke to each other about how hard these families have it and how difficult life must be for those children and parents. We wondered if we could live this life if Sebastian was to beat the odds (I would just like to point out that even though I work in he disability field, I recognise that there is a huge difference between being a paid carer/therapist compared to being emotionally invested in the person and to live that child's disability with them 24/7, I admire the parents who do this, especially as they often do so alone and without recognition).

The Geneticist and Genetic counsellor were incredibly nice. They told us everything we needed to know in a very caring but straight forward way. We really appreciated the time they took to talk to us. They gathered as much information as they could and filled in some gaps in our (googled) knowledge about skeletal dysplasia. They talked genes and chromosomes (and told me that the amnio test probably won't tell them anything new - great went through that for nothing!) and explained what Sebastian's measurements meant. The Geneticist informed us that his limb to body ratio was on the severe range of the spectrum, one of the most significant they had seen. She had already spoken with doctors familiar with skeletal dysplasia who also confirmed this. She went on to discuss that lethal skeletal dysplasia meant that our gorgeous little boy was expected to die within utero and this could occur at any time from now. If he was to survive and make it to full term he would take maybe two breaths before passing. If a miracle was to occur and he survived against all the odds, a prediction of his intellect could not be made, however physically he would likely be in pain, prone to fractures and broken bones, unlikely to survive past his first birthday. 

Could you imagine changing the nappy of a baby with brittle bones? With a baby who struggles to breathe because his lungs are not able to expand to their capacity because his rib circumference is too small? How incredibly painful for him, and how incredibly heartbreaking for us as parents to have to be the ones to inflict this pain on him and watch him live it. 

However, the chances of Sebastian beating all these odds were minimal and we were faced with the news that he could pass away in utero within the coming fortnight, week or even hours. Our bundle of joy was going to be taken away from us before we could even meet him. We would never get to hear his laugh, feel his hugs or his little hand in ours. We would never know how he sounded when he cried or whether his smile would light up a room. We had only known him for 19w2d and whilst he was still with us at this stage, we already grieved the life he was going to miss. 

The decision to interrupt the pregnancy was made for us, we didn't have a choice anymore as Sebastian's illness had determined his fate, and whilst we wanted to fight for him and protect him from everything, we were incredibly helpless. 

Over the next week we would attend more appointments to have everything confirmed and I would repeatedly ask all the doctors and midwives "how accurate is all this information" only to be told it's very precise. Our appointments would continue until Sebastian passed and then I would be induced... Way sooner than I could have ever imagined. 

The feelings of guilt, love and sadness were beginning to rise. 

Second trimester scan + Second wedding anniversary = Start of a very sad journey

The other day James and I were driving home from somewhere (I can’t even remember where, because everything is such a blur lately), but he said to me “everything just went so fast…we had him one minute and we were so happy and now we have nothing”. This perfectly sums up the last four weeks for us.

It was Friday, August 7^th, 2015 and despite me having a cold and feeling like crap, we were so excited for our 20 week scan. It was the day before our 2^nd wedding anniversary – what a perfect way to start our celebratory weekend off by seeing our little, precious baby on a screen and finding out the sex! We had already planned to go shopping straight after the scan to buy some gender-specific clothing. I honestly thought I was having a girl, but James was adamant it was a boy. We had decided that we were not going to tell anyone the sex until our gorgeous baby was born (I definitely thought I was going to struggle with this!). When you book in a scan, and you’ve never been pregnant before (or perhaps had a complication), you sort of forget the scan’s purpose is to check everything is developing ok and not just to confirm the sex for you and give you photos.

(I just thought I would add in that both our Mums’ had dreamt that we were having a boy, however another relative did a Chinese calculation and was sure it was a girl...My mum had also had a dream that our boy had dwarfism…which is just weird given what happened next).

So off we went for our scan - I was 18w6d pregnant and we were certain we would be there for hours as our 12 week scan (which all came back healthy and normal) took 2 hours because our cheeky boy wouldn’t get in a viable position. I still think about how naive we were sitting in the waiting room that day.

We thought the scan was going well. The sonographer walked us through all the different body parts of our little guy and showed us where his genitalia was, I remember him saying to us “..and there is the sex”, “a boy!?” I asked with a huge smile, he didn’t really reply just nodded. Even though I had wanted a girl and thought I was having one, suddenly a boy felt perfect. We already had our names selected and straight away referred to him as ‘Little Sebastian’.

When I look back at the ultrasound now, it really did go longer than you’d expect and I don’t know why I didn’t pick up on the sonographer measuring some body parts twice and talking less to us. At the end of the scan I had asked whether he required to do an internal ultrasound as the midwife had requested my cervix length. Whilst he replied that everything related to my cervix was fine and visible on the scan, what he said next changed our lives forever… “at the moment we are really concerned about [your] baby’s limbs, they are a lot smaller than they should be..  I have called the hospital already and they are expecting you there within the next hour, you will need to go straight there now”. Our faces stunned and with me fighting back tears, he left the room to collect prints of our scans to take with us to the hospital. During the ultrasound he had asked me to empty my bladder, this is when he must have called the hospital – we felt angry that he called them before telling us. This was our son and he was telling some stranger about him before us!

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We didn’t talk to each other on the way to the hospital, what could we really say? When we arrived I explained to the receptionist that we had been sent straight from our morphology scan to the hospital, I said my name and she quickly responded “oh, Lauren yes…” we waited what felt like a lifetime before a doctor saw us (on reflection it was really only about 2-5 minutes, maximum).

The doctor was very polite and friendly, she collected our family history and explained to us what short limbs meant. She spoke with a doctor in another room to confirm information as it came through from the ultrasound technician. We were explained that our baby’s limbs were very, very short and were asked if skeletal dysplasia was in our family or whether James and I were related… obviously the answer to both these questions was no. But we started to get the idea that our baby had Dwarfism. Whilst this made us a little sad, we were OK with that (I work in the disability field and felt like we could still provide him with a good, quality life). However the doctor then said, in what felt like a passing comment, “sometimes, and it’s very rare, but sometimes, when limbs are this short it can be lethal”. I burst into tears. WHAT!? How can my baby’s limbs cause death? I am pretty short and I have my own bone deformities, so I just assumed the baby would be like me. Having a still born was never on my radar!

She organised an appointment to attend another hospital first thing on Monday morning and told us that the other hospital had access to tertiary resources and would be able to assess everything better.

That was it.

Our appointment was over.

When we got home we were in shock. I read the report from the sonographer and noticed additional ‘problems’ that the doctor hadn’t mentioned to us, such as poor ossification of the skull and facial bones (I’ve put a snippet of the report below for you to see). Suddenly things were more serious than we could imagine and we were left for the whole weekend to wonder how rare lethal skeletal dysplasia was and whether our baby was going to be OK. That was the longest weekend of our life. I think I googled every medical term on the report and searched for some answers or people who had similar stories. Unfortunately there are so many different types of skeletal dysplasia (over 200 apparently), so finding someone to relate to was difficult and did not happen, especially as our baby’s limbs were less than 2^nd percentile.

 What we planned to be a perfect start to an anniversary weekend, we found ourselves doing mundane chores, crying and talking about the ‘what if’ scenarios. It was really hard to celebrate that we were having a boy – finding out the gender seemed to have dissolved into the background of all this new information. We did eventually buy some boy clothes for Sebastian that weekend as an attempt to put positive energy into the universe, but we really didn’t know whether he would ever wear them… happy anniversary to us 

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This is the scan of Sebastian's head. I love this photo because he looks like he was reassuring us with a big smile (a smile he had when I delivered him)

the photo below is what I posted on Facebook, no one really knew the true meaning to that message or what we were going through. 

Shock

It's 1.23am and I am wide awake, my eyes filled with tears and nose blocked from crying. I lay in my bed next to my husband and I fight back loud sobs so I don't wake him. This is me every night lately, this is the darkest and lowest point of my life so far. I don't even really know if anyone will ever read this post, but I feel like I need to write this all down in order for me to start healing...or at least get some sleep, even if it's just tonight.

My life over the last 4 weeks has been the hardest it has ever been. I honestly don't know where to start with putting this into words let alone sentences. Perhaps I will give a run down of everything so far and then go into each event in more detail as I feel the need to relive it.

On August 17, 2015 at 3.24pm I delivered our beautiful angel baby, Sebastian into the world. He was born sleeping and weighed a tiny 140g....in my eyes, he was perfect. I was only 20 +2 weeks pregnant. In Australia, 20 weeks gestation is when a baby can be considered stillborn - that means there were two days between Sebastian being legally recognised as a stillborn instead of a miscarriage. Those two days allowed me to register his birth and provide a funeral - and I'm so glad I got that! I am so glad that if we ever provide siblings to Sebastian (which now involves lots of doctors, tests and anxiety for us), he will be recognised on their birth records, he will be recognised as a big brother, his existence will be acknowledged.

Sebastian died from a lethal diagnosis of skeletal dysplasia. We had only learned of his prognosis 9 days prior. Nothing had sunk in.. We were in shock for those 9 days. We were handed between three different hospitals and whilst we searched for a different diagnosis, it never came. We were (and still are) heartbroken to learn that his bones were not growing in size or strength and that his organs had been. We were horrified to learn that his bones would restrict his organs from functioning due to the lack of room available for them to operate, or that he is prone to fractures in the womb and that his condition was one of the most severe that the doctors has seen. But worst of all, he was expected to pass away in utero within the coming weeks - nothing prepares you for that news.

Sebastian was our first born. My husband and I had planned this pregnancy and he was wanted so much. His nursery was full of his furniture in boxes awaiting to be put together, along with little items we had collected at weekly grocery shops
And gifts from family and friends. The room,formerly our guest room, had been cleared out by us in preparation for his arrival - a high chair already sat assembled, along with a feeding chair and a change table. We had just organised a  wardrobe to be installed at the end of the month and I had just found the curtains I wanted to hang, pending the gender we would find out the day after at the 20 week scan. We were so excited. Our friends, family, colleagues and neighbours had been told that we were expecting only a couple of weeks prior. My belly had just started showing as I invested in some comfy maternity jeans....

But now, here I am.. Empty handed and looking at a blue pvc box that contains what once was all my hopes and dreams, a box that contains so much love and admiration, a box that holds my son's ashes.

There are many things I feel now since losing Sebastian - guilt, sadness, sorrow, stuck, anxious and empty. This is why I need to write down Sebastian's story and document the journey in detail of what we have been through and the long road we still have ahead of us...But I also want to write this down because I never want to forget any of this emotion or any story that connects me with my son. But I guess that's what grief is about....