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Laura's Story - Part One

I'm Laura, I'm 28, I’m also a wife to Scott, a mother to Zoe and a caffeine addict.

 

 We live in Toowoomba, QLD and I work full time doing HR – hence my caffeine dependency. Scott - my darling husband - studies full time in Brisbane.... Just a casual hour and a half from me. He doesn't commute every day but is definitely close enough to come home through the week if he needs to, otherwise I see him on the weekends.

 

Our beautiful daughter Zoe gained her angel wings in April 2016. We gave her a furry sibling in March 2017 when we brought home our cheeky puppy, Betty.

 

Scott and I got married in October 2014 and I fell pregnant that November. We had been trying to conceive since August in the hopes of announcing we were expecting at our wedding. Just before I fell pregnant my GP and I were trying to figure out the cause of some abnormalities to my period and determine if I was ovulating each month due to some concerning pain I was having throughout my cycle. When I returned to have what should have been a follow up with her, I was actually telling her I had had a positive home pregnancy test.

 

My pregnancy progressed and I chose to be cared for by a private midwife birthing in Toowoomba’s public hospital. I had horrible morning sickness almost straight away as well as terrible food aversions otherwise everything seemed normal. We attended our 12 week ultrasound and apart from a seemingly small issue of two technicians finding it difficult to get a good nuchal reading everything was going well. That same night Scott returned from his night shift at the hopital and had to take me back there as I was in severe pain that wouldn't go away. It turned out to just be an incredibly bad UTI but it was a scary night for the both of us. At our 19 week ultrasound we found out we were expecting a girl.Scott will probably hate me saying this but his face fell when he learned we were having a girl, just for a second and then I knew our daughter was going to be Daddy’s little princess.

 

The next few months passed in a blur of work, setting up our nursery, maternity photos and life in general. Before I knew it I was 35 weeks pregnant and we were attending our birthing class and enjoying our last few weeks as a twosome. At my 36 week check-up my midwife suggested I should seriously consider finishing work sooner rather than later, I was having Braxton hicks quite often and was definitely getting over this being pregnant business. The baby was engaged and I was ready to hold her in my arms. Originally I had planned to work up to 38 weeks so I spoke with my work and we put a plan in place for me to go on maternity leave a little earlier.

 

The first day of my maternity leave I was unable to feel Zoe moving and off I went to get monitored. The monitor picked up lots and lots of movements and a steady heartbeat, however, Zoe had flipped in to a breech position! Slightly unusual at this gestation but not unheard of. A late ultrasound a couple of days later did indeed confirm a still breech baby and a high but not abnormal amount of amniotic fluid.

 

I was able to naturally try to turn Zoe in to an optimal position for birth for four days which despite my best efforts with acupuncture and massage appointments ad well as every exercise on the spinning babies website. At the end of the week I made the decision to have an ECV to try to turn Zoe.I went up to the hospital with my midwife and settled in to a room where I met with a lovely obstetrician who conducted a scan before conducting the ECV. After my ECV, Zoe successfully stayed engaged.

 

From that afternoon on, I had pre labour symptoms and would sometimes have contractions for hours without them developing in to full blown labour. To say I was frustrated is an understatement. I was totally over it by this stage.

 

My due date came and went andplans were made for an induction at 10 days over my due date, which felt like eternity. At 5 days overdue I was again concerned about Zoe's movements and my midwife suggested we go up to the hospital with her rather than the clinic for some monitoring. We also spoke with the on call obstetrician and it was decided we would break my bulging waters as I was contracting on the monitors and four centimetres dilated.

 

At this point it was noted that I had an excess of amniotic fluid – literally flooded the bed and forced the obstetrician to change his scrub pants! My labour progressed relatively quickly to 8cm dilated however, my labour then stalled. When my labour stalled and as I had the excess amniotic fluid I was required to be continuously monitored. At this point I was also moved from the birth centre to the birthing suite and given syntocinon to further stimulate my contractions. After a few more hours I had only progressed to 9cm.

 

After consultation with my midwife and anobstetrician it was strongly advised that I have an epidural to further relax my body and progress the last cm of dilation. Before I knew it the anaesthetist was talking to me and as my epidural was administered I finished dilating – for anyone that is wondering yes, I went through the final stage of dilation whilst sitting on the edge of a hospital bed with a giant needle was stuck in my back and I was unable to move. I was less than impressed!

 

After I was significantly numb and comfortable Scott and I were able to sleep for about an hour while Zoe naturally descended down the birth canal. When we were woken up it was time for me to push. After 45 minutes of pushing Zoe arrived, she was caught by my midwife and Scott and immediately placed on my chest. After about 20 seconds it was apparent that Zoe was totally unresponsive. At this point the emergency button was pushed, the umbilical cord cut and Zoe placed on a resuscitation table by the obstetrician as a team of Paediatricians/Neonatologists and nurses worked on Zoe.

 

At this point in time everything was very confusing to me. I was exhausted and still quite out of it due to the epidural. Scott and I were unable to see Zoe from the crowd of people in the room and were not sure what was happening. Occasionally we were asked questions to give consent to treatment for Zoe.

 

After Zoe was stabilised she was able to be placed back on my chest for only 30 seconds and a photo of the three of us to be taken. Zoe was then taken to the special care nursery. During this time my midwife had also given me an injection to deliver my placenta for it to be checked over and my epidural turned off. We were told Zoe was still being worked on and that soon Scott would be able to go down to the nursery. We were also given some breakfast and then Scott was able to go to see Zoe. He came back to see me and showed me some photos before a doctor was able to come speak to us. When the doctor met with us they were able to tell us that Zoe was experiencing significant breathing difficulties and would need to be intubated and transferred to a Neonatal Intensive Care Unit in Brisbane. They also noted that Zoe had very weak and floppy muscle tone as well as a small recessed jaw.

 

Scott and I were both in shock, we were upset and there seemed to be no answers as to why this was happening and how to fix it.Within hours we were all on our way to Brisbane. Zoe was transported by road ambulance as a helicopter was unable to land at the hospital that morning. Neither Scott nor I were able to be transported in that ambulance with Zoe. I was transferred as an inpatient in another ambulance shortly after Zoe. Scott was physically incapable of driving as he had been awake most of the night with me. He ended up being driven to Brisbane by one of our friends.

 

Once we arrived in Brisbane we were even more emotional, scared for our daughters life and at a loss as to how to explain our situation to our family and friends that were eagerly awaiting Zoe’s birth. We started slowly, by calling our parents and texting our siblings. We didn’t know what to say, we didn’t have the answers to the questions. All we knew was that we would know more as the days passed.

 Laura and Zoe Supermumma and Co

So began our life of living in a room at Ronald McDonald House and spending all of our time in the NICU at the Royal Brisbane and Women’s Hospital. It’s a very strange experience to be a parent but not really be a parent. Your interaction with your child is dictated by the doctors and nurses. You spend a lot of time either staring at your child or reading to your child. You want to be their every waking moment but physically can’t. You develop a very close and personal relationship with a breast pump. You also don’t bat an eyelid at pumping milk in strange places or in front of complete strangers. It’s a surreal experience. You learn medical terminology and you live for those moments in the day where you are able to complete the cares on your child, bathe them or cuddle them. It was five days before I was able to hold Zoe – it felt like an eternity. Scott waited another two days before he was able to hold her. When you are in NICU every seemingly small achievement for your child is celebrated. Every weight gain, every line removed, every millilitre of food that is increased – the nurses are there to help your celebrate every win and talk you through every bad moment.  We spent 3 months with Zoe in NICU. She graduated through various rooms in intensive care until we finally were able to be placed in the special care nursery. However, she did suffer many setbacks as well. Zoe literally outgrew the facilities available to us and when she was around 10 weeks of age we started discussing a transfer to the Lady Cilento Children’s’ hospital. A round this time Zoe crashed quite significantly and we came very close to losing her. It was the first time that I remember having to have end of life discussions. No parent should ever have to have that conversation, unfortunately I know too many parents that have had that conversation with doctors.

 

In November we transferred across to the Paediatric Intensive Care Unit at the Lady Cilento Children’s hospital. We moved from one Ronald McDonald House to the other. It was eye opening to be in the PICU, there were kids off all ages and conditions. The original plan was to spend a few days transitioning in to the hospital by staying in PICU and then moving up to the babies ward. That never happened. Our new team of doctors decided that Zoe’s level of care was too great and needed one on one or at most one to two care which only the PICU could offer. We eventually settled in to the new hospital and a new set of “rules” and way of doing things. We were able to take Zoe out to the balcony of the PICU, this was the first time we had ever been able to take her outside. We started conducting more in depth tests and within two weeks we had a meeting with Zoe’s neurologist. Based on the tests she had conducted she was able to offer us two possible outcomes. That Zoe had a condition where symptoms could be managed and treated however, she would require a high level of care for the rest of her life or that she had a condition that could not be treated and would most likely pass away at a young age. We held out hope for that we would soon receive a diagnosis and that it would be the first option.

 

After 4 months in Brisbane, 3 months in NICU and 4 weeks in PICU we were finally received a diagnosis. I still remember this day vividly. Zoe was diagnosed with a congenital myopathy. She had two mutations on her RYR1 gene that resulted in her weak and floppy muscles and poor breathing. We were told that Zoe’s genetic disease was rare and the only known case of its severity. Of the mutations that Zoe has, one has never been seen before and the other only a handful of times. Given this situation we were told that Zoe would pass away from respiratory failure most likely before her first birthday. This was the diagnosis we had feared since the day that Zoe was born. It was an incredibly emotional and difficult time. I think Scott and I both went in to shock. We were given some options, staying in the hospital and possibly transferring to a ward, transferring to our home hospital or caring for Zoe in our own home. Initially we didn’t really process this information and were scared about caring for Zoe on our own. We asked lots and lots of question and in the end decided we wanted to finally take our daughter home. We would be supported by the Paediatric Palliative Care Service, the Toowoomba Base Hospital as well as Blue Care in order to care for Zoe.

 

Plans were made quite quickly for us to leave the hospital. But first we needed to finish moving…. Yes, moving! You see when I was pregnant we decided the renovated cottage we were living in was awesome for a young couple but wasn’t ideal for a baby and definitely wasn’t suitable for a baby with special needs. We eventually got to the point where we had to move from one house to the other in early October. Leaving and driving home was traumatic, walking in to our house with a nursery set up and no baby was too much. Packing everything was overwhelming. I was worried about not being with Zoe. I got mastitis because I probably didn’t pump for as long or as frequently as I usually would. With a team of people we literally packed and moved everything in 24 hours. It wasn’t neat or unpacked in our new place. In fact I distinctly remember leaving our kitchen table in our garage. I don’t recall where the chairs went. There were boxes everywhere. As soon as the truck was unpacked we locked the house and drove straight back to Brisbane to see Zoe. So we had a lot to sort out before we could bring Zoe home! We spent close to three days unpacking, sorting, getting rid of things we didn’t need or wouldn’t be using. Then we spent almost one other whole day modifying the cot and change table and other bits of pieces so it would be easier for us to move Zoe around. This time was spilt around a few things that were going on for Zoe as well. We also spent most of our time staying at the hospital learning how to care for Zoe and rarely spent much time in our room at Ronald McDonald House.

 

I extended my maternity leave – originally on planning on taking a few months off and Scott had deferred his university studies so that we could be full time carers to Zoe. Our friends and family had set up multiple fundraisers and a go fund me page to help cover our medical expenses and allow up to make memories to last a lifetime with Zoe. Something we will forever be grateful for. This fund and fundraisers allowed us to not have to worry about money to pay our bills and be able to buy all of the things that we needed for Zoe.

 

Just before Zoe’s release from hospital things weren’t looking very good and we were advised our time with Zoe could be significantly less than we were first told. Another heart breaking blow for us but all I knew was that I wanted her home. I wanted her to know a life outside of a hospital.

 

The first few months of Zoe's life I really didn't feel like a mother. I was a mother, I had the post-partum belly and engorged breasts to prove it but I wasn’t able to do the things I had envisioned during my pregnancy. I grieved many things for Zoe when she was born and my ideas of what motherhood would be like. I developed terrible anxiety and would hate every moment I was away from the hospital, I was constantly worried and would freak out every time my phone rang always expecting the worst.I was so very thankful that the NICU provided a social worker for you to talk to, that the PICU offered the same service. That my employer also provides an employee assistance program that I was able to utilize. That I met other mothers in the unit who were experiencing the same problems. My friends and family were also excellent sounding boards for me.

 

Coming home was just as surreal as the first weeks after Zoe’s birth. All of a sudden we had turned our home in to a mini hospital so we could care for Zoe. I was so excited and quietly shitting myself at the same time. I struggled a lot when we came home. The same problems all my friends had warned me about or experienced… Take care of baby and everything else before you even think about feeding or bathing yourself. Leaving the house was a carefully planned mission or a demand from Scott to give myself a break. I wasn't sleeping well, I worried about things all the time, always so anxious. I was glad that I had already made the decision to give up exclusively pumping breast milk because I know I would not have coped at all if I was doing that. Eventually my doctor gave me some sleeping pills and told me to give myself a break. The same thing our wonderful PPCS team told us over and over again. We had a very scary time on Christmas day of 2015, Zoe crashed at home, we panicked, we were ready for her to go although we had been warned. We managed to bring her back a little ourselves but the numbers still were not looking good as we call PPCS. We quickly made the decision to call 000. Within minutes the paramedics arrived – as Zoe started to stabilise further and improve her numbers. We then had multiple conversations with the paramedcis and PPCS as they wanted to readmit Zoe to the hospital or at least take her up there. As a compromise, a Care Flight Doctor happened to be close by with an intensive care paramedic who spoke with us, checked over Zoe and spoke with PPCS and we were able to stay at home.

 

Eventually I adjusted at the start of 2016; I coped better as we settled in to a routine. The daily rituals I took comfort in. We learnt even more about Zoe, what she liked and disliked and you know what – she thrived. She grew longer, she put on weight, she slept better. She knew so much love and she improved from that. Things at home were great, we had extra therapies for Zoe and were linked in with some great allied therapies. 

 

In the days leading up to Zoe's passing, things were incredibly difficult for all of us. Zoe was not herself and a phrase we had been warned about popped in to my head. You will know when it is her time.... PPCS had said this to us several times and as much as I didn't want it to be I knew it was her time. She was tired, she didn’t want to fight anymore.After a hard few days we had some very tough conversations with our doctors about making Zoe as comfortable as possible. We increased her medication doses and we did all of her favourite things. The morning that Zoe passed away we knew it would be coming soon. I was heartbroken to hear one of our doctors say that it could be hours or days. I didn't want to see my beautiful baby suffer anymore. We had a few hours where read to Zoe and told her stories and just how much she was loved. She fell in to a very deep sleep and soon after she slipped away.

 

That afternoon much like Zoe's arrival is scarily blurry and clear all at the same time. We called a local pediatrician we had been linked in with and who had been making house calls to us, he came as quickly as he could to tell us what we already knew. He arranged some official forms for us and called the palliative care and blue care services on our behalf and left us to grieve. We spent the next little while removing the BiPAP mask that had allowed Zoe to breathe, her feeding tube that had allowed her tummy to always be full and her syringe driver which we administered her medication. Then we were finally able to cuddle Zoe without jostling wires and breathing tubes for the first time. After what equally felt like eternity and seconds we called the funeral company, this was heartbreaking in the truest form for both Scott and I. We both barely held it together and once Zoe had left our home we broke down.

 

We managed to pull ourselves together at some point and I had a urgent need to remove all of the medical things from our living room and kitchen and place them in Zoe's room. I needed to be able to shut the door and not have to look at any of it.

 

Then started another phase of our life, planning the rest of our daughter’s funeral. It reminded me of the final few days of wedding planning, stressed, family members asking questions we just didn't want to deal with but had to except this was not a joyous occasion, this was the worst thing I ever hoped to experience. We chose to celebrate Zoe's short life and to have her cremated. We weren't sure we would always be living in Toowoomba and I couldn't bear the thought of not having Zoe with us.

 

In amongst all of this Scott and I also planned a much needed break a trip to Bali , Melbourne, the Gold Coast and central coast of NSW. We also arranged to return all of the medical equipment to the hospital and have our final meetings with PPCS. We were so pleased to hear that the excess medications assigned to Zoe and baby formula would be donated in Zoe's name to the RSPCA Animal Care Campus in Wacol for all the sick animals to benefit from.

 

Zoe's final farewell was on a sunny albeit cold Saturday morning. Still the most heart wrenching moment of my life to have my husband and friend Matt carry Zoe's coffin out of the chapel and lay it in the hearse.

 

And so began yet another strange and surreal time in my life, so many tears and so much heartbreak. So many precious memories were made and I am so thankful for that. I grieved again, some days are harder and some easier but ultimately I still miss my daughter just as much almost one year on as I did the day after. The grief comes in waves at times it is still unbelievably overwhelming and at other times I can truly find and experience joy, happiness and laughter.

 

I returned to work in late June 2016, I felt ready and as much as I was shitting myself about returning my employer could not have been more supportive. I went back a few days a week initially, I was able to have extra time off if I needed it, go home early if I was having a bad day. As I said I work in a HR department and deal with roughly 100 employees out of Queensland, almost all of these people had watched my pregnancy although not all of them were aware my daughter had passed. Answering their questions could sometimes be difficult especially for new employees who didn't witness my pregnancy. I have photos of Zoe around my desk, having them there to look at makes me smile and each photo holds a memory.

 

I still sometimes falter when strangers ask if I have children. Saying yes opens up a whole other barrel of questions and saying no feels completely wrong to me. I'm still working on how to answer that question... something every loss parent struggles with I am sure.Maybe one day the words will come easily to me. I always dread when I do say I have an angel baby. How is this person going to react, what are they going to say. I have heard many things from a range of people, they don’t know what to say and sometimes because they don’t they say the first thing, like “Well you are young, you can have another one”. I try not to take these things to heart, I try to remember that these things are said because people don’t know what to say and they hope that this is comforting. I can’t pretend that comments like that don’t hurt.

 

In January of 2016 we started making some enquiries about how Zoe's genetic mutations had come about. Scott and I had provided blood samples to be tested to see if one of us or possibly both of us had passed these mutations on when we were still in the hospital. We were contemplating going down a very expensive private testing path when we received our results. Scott and I had each passed along one gene mutation to Zoe. We spoke with a geneticist at length and learnt that we would always have a 25% chance of conceiving a child with the same genetic makeup and therefore the same congenital myopathy as Zoe. This also means that we have a 75% chance of conceiving a child who is genetically healthy.

 

We also found out my mutation is linked to a condition called Malignant Hyperthermia and I should avoid certain inhalation anaesthetics or I could have a very serious reaction. Scott's mutation was unknown (he has since participated in a research study which found he also is at risk of Malignant Hyperthermia). We were advised that we had two options to conceive a child that was biologically related to both of us. 

 

  1. We conceive naturally and have CVS testing at 9 weeks gestation to find out if we were expecting a genetically healthy child. We would then either have the option to continue the pregnancy or have a medical termination. Our thoughts on the matter were that we would choose to terminate. I feel the need to add that this is a personal choice between Scott and myself, I would appreciate that people respect our choice. However, as we live in Queensland where abortion is still in the criminal code I need to have a team of doctors approve my decision to terminate the pregnancy.

 

OR

 

  1. We undergo a full IVF cycle utilizing PGD techniques to test embryos prior to implantation. After further consultation with a geneticist in the area we were given a very low success rate as they didn't know enough about Zoe's condition and that the embryo could still divide and have mutation after implantation had occurred.

 

We processed this information for a couple of months and decided that I wasn't physically or mentally ready to carry another child. I had many feelings about all of it but I ultimately couldn't get past the fact I wanted Zoe to be my entire focus for the entire time she was with us. This is not a decision I regret at all.

 

When Zoe passed away at the end of April we briefly discussed trying to conceive straight away but again I knew I wasn't ready. The fear of conceiving and subsequently terminating a pregnancy or it ending in a miscarriage or stillbirth or going in to premature labour was too hard to get past. I had spent too long in hospitals I was all too aware of things that could go wrong and just how common it is.I needed more time and we talked about waiting until the end of 2016 and making a further decision then.

 

Quite unexpectedly in July of 2016 my period was late. Several days late to be exact. I panicked and knew I needed to take a pregnancy test. I was not using contraceptives and Scott and I had not been careful around the time I would have been ovulating. I took the test, set a timer and walked away. When the timer went off I slowly walked in to check. It was negative. I burst in to tears and was so incredibly disappointed and upset that I wasn't pregnant. I took this as a major sign that maybe the desire for another child outweighed the fear.

 

I made the decision to enquire more about birth records for Zoe to understand more about my labour and the last few weeks of my pregnancy. We met with the midwife and discussed everything, all of our fears and concerns and went of my labour and birth in great detail. I also spoke with and gained some much needed encouragement from my massage therapist – this doesn’t do her justice she is also a yoga instructor and doula and specialises in women’s health – she is just amazing really. Scott and I talked further and we decided we were ready, we wanted to hold another baby in our arms.

 

We had decided we would start trying to conceive in September and I fell quite ill at the end of August. It's quite a hilarious start to the story - it wasn’t at the time but oh boy do I laugh about it now - another one of those this rarely happens but it happened to you things. I casually mentioned to my doctor I was having a lot of pain near my ovaries whilst I was being treated for another gynaecological condition, she let me know this was definitely not something to be blasé about. The pain got worse to the point where I couldn’t work and I wound up in hospital with them stating my appendix was fine and I most likely had a sexually transmitted infection which had resulted in pelvic inflammatory disease. That got this from my recent medical history. This doctor couldn't have been more wrong and I'm so glad my GP listen to me and referred me to a wonderful gynaecologist.

 

I ended up having to have gynaecological surgery to clear up some gunk from burst ovarian cysts. My gynaecologist also found some evidence of endometriosis and when she got a look at my appendix had to call another surgeon to take that out as well. I was under aesthetic for a couple of hours and the operation really knocked me around. Given my risk of MH they were a bit concerned about my heart rate and temperatures after the operation even though I had been administered safe anaesthetics. Around a week or so after my operation, I was back in the hospital from severe pain yet again - turns out I also suffer from ovulation pain and with everything being a bit tender after the operation it was not a pleasant experience.A follow up with my gynaecologist at the end of September 2016 saw her happy for us to start trying to conceive again and she ultimately didn't think we would have any issues.

 

Since then I have conceived twice. In October I had a chemical pregnancy and inJanuary of 2017 I had a miscarriage at 6 weeks gestation.Two more gut wrenching blows. What I wouldn't give to hold a baby in my arms. How angry I am at myself and my body because I can’t help but blame myself. I supposed to be able to grow and carry a baby. I am slowly building myself back up again. Just one day at a time, sometimes one hour at a time. This trying to conceive business is horrible. It's a constant roller coaster of emotions and peeing on sticks.

 

I am yet to meet a fellow loss mumma in my position, someone else that has lost their first born and has no other children. I spent 9 months growing my daughter and making room for us to become a threesome for a brief moment in time we were and now we are back to being a couple. Just the two of us when we should have another piece to our puzzle. Our whole lives will forever be bittersweet, whenever anything wonderful happens I forever think we are missing ur beautiful girl to share this with.

 

Our fur baby Betty really has helped to heal my heart. She keeps me company when Scott is away and gives me something else to focus on. She is my little ray of sunshine on those days when life just seems a little bit too hard. Who doesn't want to come home to someone who pees in excitement when they see you?!

 

I know that one day by whatever means we choose either biologically or by adoption we will have another child. Maybe it will be soon, maybe it won't but ultimately one day I will be chasing my child around and not just my dog.

 

I am proud to be mum, I am proud of my daughter and that even though she was little she was fierce. She made an explosion and it makes me insanely happy when our family and friends speak her name, remember her and love her as much as we do.

 


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