"I thought I was living a nightmare."

Blog post by Mum and Volunteer Sheree.

It was a Sunday afternoon and I was relaxing watching Netflix, as I'd been feeling a bit off with a mild headache.  I was 33 weeks pregnant.  I remember laying there thinking surely I can't get much bigger than I currently am, and just thought I was tired from working and that was the reason for my headache.

I had a rough nights sleep that night and called in sick the next morning as I just didn't feel like I had the energy to go.  I had an appointment with my obstetrician that afternoon, but I still just thought what I was experiencing was normal pregnancy symptoms.  It was at that appointment I was told I was being admitted to hospital for observation as I was showing early signs of pre-eclampsia.  I was scared and severely emotional.

My baby was the result of a hard journey through IVF and the very thought of any threat in my pregnancy resulting in anything other than our dram come true, was too much to bare.  I was a total mess.  My night that night in the hospital was full of hourly checks and observations and by morning I was told by my obstetrician than I wasn't to return to work, as I was still borderline pre-eclampsia, but I was fine to head home on bed rest.

I spent the next 4 days sitting on the couch taking it easy, but on Friday night I began to feel off - a little nauseous and that headache was back. I didn’t know whether to think too much into it or whether to go to the hospital. After an hour wondering I decided to at least call the hospital. After telling them how I was feeling they advised me to come in. So off we went to the hospital and I was hooked up to a machine to see how the baby was going. He was doing well, but I was not. The doctor told my husband and I that my liver and kidneys were showing signs of being in distress and whilst it wasn’t an absolute emergency that night, I was to stay in hospital. I thought I was living a nightmare. I was so scared for my baby and the thought of him being born early was too much for me to cope with. I was an emotional wreck.

The next three days were a routine of hourly checks and lots of blood tests. By Monday morning my obstetrician wasn’t willing to hold off any longer and I was to have a caesarean that morning, as my condition had worsened. Again with the freaking out.

The nurses were so supportive. I was taken down to the Neonatal Unit to see where my baby would go when he was born. It was weirdly comforting and intense all at the same time. The nurses talked me through what some of the machines were and what role they would play for my baby. 


My son was born 3 hours later at 33 weeks and 4 days. He came out crying and weed everywhere, so I was able to hold him before he was taken away. It was this moment I hadn’t wanted to miss out, of all the moments you get when having a baby. I was so amazingly happy and so in love. 

We spent 3 weeks in NICU before my son was able to come home. The nurses and doctors in our nursery were absolutely amazing. I was allowed to be my sons mother. Even though changing a baby with cords is difficult, it was amazing. The day we were told we could take him home, I panicked. We were in this safe little bubble in the nursery and it just seemed so scary that suddenly I really would be totally in charge. 

My son is now 14 months old. He’s endured two surgeries in his short life, but he is healthy, happy and totally adorable. When we think back to our time in the nursery, we just remember how lucky we were that all our little man had to do was grow a little. For some this isn’t the case. The experience has made us more aware of what others sometimes have to go through, and how lucky we are. Every day with our son is amazing.

We welcome you to share your story with us.  Please e-mail your story along with a few pictures to admin@tinysparkswa.org.au with 'Family Story' in the subject.

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Social Impact

Late in 2017 we had the pleasure of working with some fabulous students from Curtin University on their project 'Just Causes'.  They were seeking out organisations who have made significant social impact for all manner of reasons.  We were honoured to be approached and can finally share their work with you.  We think it's awesome, but we might be a bit biased, see for yourself.

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My Strong Boy

Guest blog post by Sarah.

I was so thrilled to hear about the research recently announced by the Victor Chang Institute that vitamin B supplementation could prevent some miscarriages and birth defects.

After having my first baby with born with an abdominal wall birth defect, Gastroschisis, then suffering multiple miscarriages and having my next baby born with intrauterine growth restriction and placental insufficiency, I was relieved when my wonderful Obstetrician indicated that I could prevent my third baby suffering such things by taking vitamin B (and aspirin).

After spending many years myself working at paediatric and obstetric research institutes, although in a non-research role, I was always interested in why my pregnancies had been so troublesome and how I could've prevented them being so.

Almost ten years on, it seems fitting to share the birth story of my first born at the same time as such a momentous research announcement that could prevent many other women and babies following my same journey.

My journey with a high-risk pregnancy began at the 12-week mark of my pregnancy in 2007.

My story ends well. My high-risk baby is now a healthy, happy nine-year-old boy, an avid Dockers fan, footy mad and full of energy.

I do know, however, that other’s stories do not end like mine and that I am truly one of the lucky ones.

It was a winters day in Perth as I took myself off to my first trimester scan. Excited and nervous to see my baby, all seemed normal at my ultrasound. The Sonographer was clearly very good at keeping mum.

"Shall I post your scans to your Dr?" the Receptionist asked. "No, no - I'll take them myself" I said, hoping to have a sneaky look on my way.

Omphalocele - the letter said. What was that? This was in my pre-smart phone days, so I had to wait until I arrived at work to google it. Dr google. Worst invention ever.

"Omphalocele is an abdominal wall defect where organs protrude outside the body. Commonly associated with a high mortality and other defects".

Heart sinks.

And I'd already told everyone at work. Thankfully, I worked in a health organisation with a bunch of very understanding people.

I got straight into my Dr who referred me to King Edward Memorial Hospital (KEMH). It was a nervous week waiting for that appointment.

Immediately at ease in the care of the KEMH staff, the Sonographer confirmed that my baby had Gastroschisis. Still an abdominal wall birth defect, but with far better outcomes than Omphalocele. My baby could survive. Relief!

I was referred to the high-risk pregnancy management team at KEMH, who I could not speak more highly of, and, whilst they couldn’t guarantee me everything would be ok, they did provide me with reassurance that they would do everything they possibly could to help my baby survive.

I had many, many scans. I was told my baby had a higher risk of being born prematurely or stillborn. But – I prayed that he would enter the world alive, and for some reason, I had absolute faith that he would.

I visited the Neonatal Unit at Princess Margaret Hospital (PMH) where my baby would be transferred for surgery following his birth. He was to be in very safe hands.

Unexpectedly, I was informed that I could deliver my baby naturally, despite his exposed abdomen. And so, at 34 weeks pregnant, while sitting in my final antenatal class, I began to feel a bit strange. I headed home, put on a movie (not sure why I chose to watch Jersey Girl that night – but not a good choice if you are about to give birth!!), and waited until my contractions got closer together.

Arriving at the hospital at 1am, it was a smooth birth and my son was delivered to a room full of doctors at 9am weighing just under 2kg, on my Grandmother’s birthday.

My baby, and his internal organs which covered his tiny body, was wrapped in a protective bag and I had a little hold before he was whisked away to the Neonatal Intensive Care Unit.

There only for a short while, he was transferred that same day via the Newborn Emergency Transport Service to the PMH Neonatal Unit - 6B.

We spent 3 months in total in that unit. 3 months of tube feeding, of constant IV lines (I'll never forget the one in his head when they had run out of other veins), of 6 gruelling surgeries, and of not taking my tiny baby home with me. 

I wasn't able to hold him for 2 months, and his only comfort was the touch of my hand and a dummy that was almost as big as his tiny face. He loved that dummy!

Initially, the Surgeon tried to insert his intestines back into his body, but as they didn't develop inside him, his tummy was not large enough to accommodate them. He developed compartment syndrome, and had to be opened up again. Slowly over about a month, his intestines were held in a plastic silo that fed them back into his tummy and stretched it at the same time. It was a very long month and I distinctly remember one of the Paediatrician's updates, "he's not out of the woods yet".

I visited my baby every day. I prayed that me being there and doing everything I could would somehow help him pull through. I also expressed milk every 3 hours for those 3 months so that I could one day feed him. The milk bank was FULL of my milk!

Despite the challenges, I felt extremely lucky that he was in the care of such competent and caring medical professionals and kept thinking how fortunate it was that he was born in a generation and country where he could be helped.

Finally, after about 2 months his intestines fit inside his body. He had quite a large 'crater' in his tummy, however, from a lack of skin covering his enlarged abdomen and this took some time to heal.

But, shortly after this, I was able to hold him in my arms!

Our next challenge was getting his intestines working. There were several kinks and blockages that had developed, and this followed with more surgeries to clear them up. Short gut syndrome was a real possibility, which would have meant a lifelong problem with feeding. But, thankfully, this didn't eventuate.

His gut started to work. He could take small tube feeds, which progressed to larger feeds, and then breast feeds - finally I was able to feed him!

And then - at last - I was able to walk him outside for the first time, 3 months after he was born. We went to the local park and I felt like the luckiest person alive.

Once we were home, he did struggle to gain weight and was readmitted to hospital once, but this was the only main hiccup following his discharge.

To this day, you would not know that my normal, happy, primary school boy had such a dramatic entrance to the world unless you looked at the scar on his abdomen, and noticed the lack of his belly button.

People say that it must've been really challenging to get through his time in hospital. It certainly wasn't ideal, but being my first baby I didn't have a comparison, and I just felt very fortunate that he was cared for so well, and that my strong boy was able to live.

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Izzy and Pea - The NICU journey revisited

Guest Blogger Allison F writes of her journey to have two gorgeous girls, both born at 28 weeks. You can follow her blog izzyandpea here.

For as long as I can remember I have always wanted a big family, I have always felt that it would be my greatest achievement in life.  Greg was at me for years to start a family, though I wanted to finish my degree before we started trying.  So when we got married we went through the whole ‘honeymoon stage’ and fell pregnant straight away.  I felt in my heart that this was going to be the year of our lives, getting married and starting a family straight away.  We had been together 7 years by now so we weren’t technically rushing into anything.

Isabelle's 1st birthday and pregnant

Isabelle's 1st birthday and pregnant

After my first miscarriage it didn’t take me long to want to try again, but after my second miscarriage it just wasn’t the same.  That feeling of being so happy to be pregnant had gone.  It almost felt like a chore, a chore of having to wait to see if my pregnancy was viable, we needed find that passion again for a family.  When we found out we were pregnant with Isabelle, I was so relieved that I call fall easily, though petrified at the same time.   I remember the day my Aunty phoned me to say my cousin had had her twins, I was 21 weeks pregnant at the time, and my cousin was only 25 weeks pregnant.  Something inside of me made me keep in contact to see how she was getting on.  When I lost my plug at 25 weeks, I knew, I knew I too was going to have a premmie and we did.  Isabelle was born at 28+4.  She is now 16months and perfectly healthy.

With having a big family we wanted our kids close together, which was one thing we had always agreed on. Even though Isabelle’s corrected age is only 3 months, we aren’t going to be using her corrected age forever.  So when Isabelle was 6 months actual we started trying.  I have to be honest, I wasn’t sure I could go through it again.  I was more worried about Isabelle and the thought of having to leave her if we went early again.  I was so torn when we found out, we were both so happy and I was also petrified, we had a scare at 7 weeks and I honestly didn’t think I could take it anymore.  My heart was breaking and the thought of losing a baby this early again was so overwhelming.  I want that big family though the heartache of it all was starting to take over.  At 20 weeks everything was perfect, by 24 weeks my cervix was still closed and perfect, by 26 weeks my cervix had halved.  My checkup at 28+4 I had no cervix and fully effaced, I was sent straight to hospital.  I was calm when I went into labour 30minutes later, I remember the nurses telling me that I can be upset if I want to be.  I was alone, my husband was at work and I was laying on the table in theater and all I could think about was Isabelle and how the hell am I going to do this again. 

Penelope at birth and due date 

Penelope at birth and due date 

Isabelle meeting Penelope outside of NICU/SCN2

On a visit to see Penelope I overheard the LC ask a mum, ‘how much do you think he has had?  Do you think he will need a top up?’  I broke down; it all came back, all the little things that I had blocked out of my head, all the little things that I had forgotten.  We were back, we were in NICU/SCN and we were going to be here for weeks.  I cried myself to sleep for the first 3 weeks, I felt like I had failed at being a mum and I couldn’t deal with the fact that I had to have a c-section.  It broke me, it truly did.  Then one day something just clicked and I turned a corner, I was on a mission to get Penelope out of there as soon as I could, and we did.  She was 8+4 when we brought her home.  That was 3 weeks ago.  I still want more children and I know in my heart I am not finished.    

© 2015 Allison Filinski | www.izzyandpea.com

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Stella and Sam

Guest blog by Theresa Miloseski, mum to Stella and Sam, as shared at the Tiny Sparks WA 2015 Gala Dinner

Good evening.  I am honored to share some of our journey with you.  Robert and I are no strangers to the awfulness of trying to conceive.  We were overjoyed when our final IVF attempt was successful in a pregnancy lasting beyond the first trimester.  Our 20 week scan was perfect so we were a little unsure as to the discomfort I experienced one night in March 2012 – back pain and a bit of a leaky bladder –but hey, that’s normal isn’t it??

 I went to work the next day and placed a call to my Obstetrician.  I was busy doing board papers for the Board meeting but he asked me to call through for a quick check up.  I never did get to finish those Board Papers.  I arrived at my Obstetricians and after a brief examination, he broke the news that my membranes had ruptured and I was about 4 cms dilated. I had never heard of the term P-PROM and so it was not on my radar at all.   He explained he was going to call an ambulance to take me to King Edwards. I was 22 weeks pregnant.  I asked the midwife, what her chances of surviving were, she shook her head and told me how sorry she was but she wouldn’t survive if born now.  We were expecting a baby girl you see, we had already named her Stella.  I called Robert and tried to tell him what was going on but I couldn’t speak through the tears so I handed my phone to the midwife who filled him in and asked him to make his way to King Edward Memorial Hospital immediately. 

Outside I could hear sirens, not surprising as we were opposite St John of God Hospital, I had no idea that the urgency of those sirens was for me.  My Obstetrican had rang ahead and spoken one of the Neonatal Doctors and advised him of my impending arrival.  I was taken into the Labour and Delivery Ward and assigned a small Observation Room.  Robert arrived and we waited.  I had no idea if Stella was alive or not. 

Two neonatal doctors arrived to talk to us about our options.  They spoke to us both at length about the mortality rate for premature babies beyond 23 weeks and what we can expect if we do give birth so very prematurely.  Our aim was to get me to 24 weeks…23 weeks if necessary.  Questions were asked, answers were given.  There was nothing rosy about giving birth this early.  I’m not sure if we were to make the decision there and then but we all agreed to aim for 24 weeks.  One of the Neonatal Doctors discussed loosely with us the possibility of intervening say if she was born at 22+5 weeks and looking viable. Our heads were spinning.  We had so much information to process and think through.  I think Stella was listening.   I let Robert deal with telling our families.  I couldn’t face it without breaking down.

The next morning my Obstetrician came to check me over and realised no scan had been done, so I was raced off for an Ultrasound.  My heart was in my mouth but the scan revealed that Stella was not only still alive but still surrounded by fluid, which meant that I had not lost all of my amniotic fluid.  Our happiness at this news was short lived when I was faced with the inevitable task of choosing an outfit for Stella should she be born in the next couple of days.  The outfit I was choosing was for photos of her and what she would be buried in should she pass away.  How do you choose an outfit that you will be burying your child in?  How?  I don’t know.  I finally chose one and it was allocated to a cupboard next to my bed.  Dolls clothes, we were going to be burying our daughter in Dolls clothes.

The days merged into one of bedrest.  I was very sick with an infection of my waters.   Four days after my admission, my waters broke fully and my Obstetrician was called. I remember saying to the nurse if she is born tonight to please, please tell them that we want her resuscitated.  I was given a steroid injection for Stella’s lungs and we got through a very sleepless night.  My Ob came to see me first thing in the morning.  Another scan was done and Stella was still alive although she now had no fluid surrounding her.  Another injection of steroids was given and my Ob disappeared for the morning and came back around lunchtime to induce me and in that time we were waiting to have her the Neonatal team arrived to set up the bed that Stella would be placed on immediately after her birth.  They disappeared for a while but came back closer to the time of delivery.   

Stella, just born

Our beautiful daughter Stella Arielle was born at 6.13pm on Monday 19th March 2012 at 22 weeks, 5 days gestation, weighing 440 grams which is about the weight of a can of baked beans and was 27cms in length, with a head circumference of 19cms.  She was handed to the Neonatal Doctor and he worked his magic on her by hooking her up to the much needed life support equipment.   I asked Robert to take photos, lots of them as we had no idea what was going to happen with Stella.  He ended up handing the camera to one of the nurses so she could take those first precious photos after she was born.   She was like a little tiny doll, transluscent with her eyes still fused shut.  The Neonatal Dr stopped very briefly and allowed me to see her before they took her to the NICU with Robert following.

Robert made his way back to me eventually and with the help of a nurse, cleaned me up.  I was able to have my first shower in 5 days.  We both tried to process what had happened.  We had no crystal ball, so we had no idea of what to expect, but we didn’t expect what was about to happen next. 

Just a few short hours later the same Dr who was at her delivery and another of his colleagues came into our room and basically said I’m so sorry, we have done everything we can but it’s not looking good, we don’t think she is going to make it.  Do you want to get her Baptized because if you do, we can organise our Chaplain to come now.  I couldn’t stop crying.  I managed to indicate to Robert to call our Parish Priest Fr Joe who was not far away at St Josephs in Subiaco.  Rob placed a couple of calls to my family and his family to update them and the prayer circle for Stella began there and then. 

I was put in a wheelchair and made my first trip down to the NICU to see our baby girl and to spend what we thought would be our last time with her.  She was covered in plastic.  I didn’t like the plastic. How can she breathe in plastic? I was panicking and was insistent to the nurse that she couldn’t breathe and she needs to take the plastic of.  The nurse was trying to reassure me that the plastic was keeping her warm and she was breathing because she was ventilated through the mouth. 

Fr Joe arrived and I calmed down.  We baptized Stella there and then. We must have looked a slightly odd sight all crowded around her isolette as he gently baptized her with a cotton bud dipped in Holy Water.  We were told to take it hour by hour. We eventually made our way back to our room and spent a sleepless night waiting for the bad news to come.  But it didn’t…and morning came around and we went to see our very sick little baby girl still fighting, minute by minute, hour by hour.  We were told that she was writing the book, this was a first for them and so she was dictating the story. 

We kept on putting one foot in front of the other and spending as much time as we could with her.  Our life became routine.  There was no improvement, there was weight loss, blood transfusions – 2 in the first week she was born and regularly thereonin, there was a nasty open sepsis wound on her back which will be one of many scars on her body in the time to come.  Her foot was squeezed daily for drops of blood from the heel pricks that they do to test her levels.  She was in a critical condition.

A couple of weeks after she was born we were ushered into a windowless room outside the glass doors of the NICU where we were told once again that they couldn’t do much more for her.  She was on maximum ventilation and her lungs were just not coping.  Did we want to leave her to slip away peacefully as she was or did we want to try her with Dexamethazone to try wean her off the ventilation she was on.  The steroids had no guarantees of working and would more than likely come with horrible side effects which would affect her later on in life, if she did indeed live.  We chose the steroids.

That night I spoke to her for hours. I told her that if it was too much for her and she was too tired to fight, that we loved her and it was ok to go. She would be the brightest star in the sky and our heavenly angel.  I told her that the Baby Jesus was with her and I gave her permission to stop fighting.  Every time I mentioned this, her oxygen saturation level on he monitor would rise.  The nurse told me to keep talking to her about whatever it was that I was talking to her about as it was working.  She survived the night.  Hour by hour, day by day. 

Stella 5 weeks old, our first cuddle

Three weeks of Dexamethazone and she was eventually weaned of the HFO and Nitric to CPAP.  38 days after she was born and weighing 530 grams we finally got to hold Stella for the first time.  Prior to that, she was simply not well enough.  I was so scared I was going to hold her too tight. I cannot describe the feeling of holding her, possibly one of the best days of my life.  I felt like a Mother, I hadn’t felt like a Mother up until that point, you see.  We weren’t allowed to hold her for a lengthy period of time because it was using up all her energy but that first cuddle was the start of many more to come.

Stellas stay in the NICU included Anaemia, Jaundice, Sepsis, eight blood transfusions, Golden Staph, Lumbar Punctures, multiple medications for all the infections she was fighting, Daily heel pricks, head scans, heart scans, eyetests for ROP of which she had Stage 1 and more.  Stella was in hospital for 153 days in total.  She left hospital oxygen free but with a condition called Chronic Lung Disease due to the long time she was ventilated.  This has seen her admitted to hospital for oxygen support many times over the past 3 years.  I cannot praise enough or thank enough the absolutely amazing team at King Edwards for quite simply saving Stella’s life.  I am eternally grateful.

During our time in the NICU, we were made aware of some support groups specifically for families of premature babies.  We were given details of websites to peruse in the hope that we could make sense of what was happening on our NICU journey.  I was very privileged to have met some of the Founding Members of Tiny Sparks through one of these support groups and their support and friendship was immediately welcomed by Robert and myself.  We are all blessed to have these wonderful families doing the good that they do.

The NICU journey is so very hard, it’s painful, it’s frightening, overwhelming, lonely and can quite honestly do your head in.  Tiny Sparks are the kind of support group you do want to have by your side on this journey.  I honestly wish they had been around when we were going through our NICU journey.  The packages that they provide to not only those currently journeying through the NICU but to those on bedrest are essential.  Their online support pages and quick response are reassuring to the many men and women who are facing their own journey.  Thank you Tiny Sparks.

These ladies were amongst the very same group of friends I called on when I found out I was spontaneously pregnant with my second child only a couple of short months after Stella came home from hospital.   Our joy at being pregnant was quickly filled with fear.  I would wish no-one to go through what we had gone through with Stella. We were one of the lucky ones because we got to bring Stella home with us, many don’t.  How could we survive going through this pregnancy given my history?  Age was a factor, I had Stella at 43 and I had a couple of months ago turned 44, so having another baby was not on our radar.  I sought an immediate appointment with my Obstetrician who was very shocked and cautious.  We decided that we would wait and see if I could sustain the first trimester.  He suggested progesterone pessaries if I do last the first trimester.  We survived the first trimester and so with daily progesterone and regular scans I made it to 17 weeks before I had surgery for the placement of a cervical suture. 

I was under house arrest with the instructions to not do too much, no lifting, straining, or anything that could jeopordise my pregnancy.  It was very hard to keep to the rules as I had a very active crawling Stella to entertain.  Regular support check ups by the Tiny Sparks ladies kept my spirits high.  Tiny Sparks was being formed during this time.  At the 20 week scan we found out we were expecting a boy.  The stitch was holding well and the progesterone was doing its job!  It was a hard pregnancy to get through.  I was filled with fear every single day that our beautiful boy would come early. 

Sam just born and cuddles straight away

I am very grateful for the support we received from the premmie community that surrounded us.  Samuel Robert was born on 19th June 2013 via caeserian section at 36 weeks 6 days gestation and weighing 2.8 kilos.   I can’t tell you what it was like to feel like a real Mum, in hospital with her baby by her side. It was just the best feeling.

Stella and Sam growing up together

I would never have made it to 36 weeks with Sam if I hadn’t had the daily progesterone or the cervical stitch.  We are so thankful that the incredible team at WIRF are leading the way with the initiative of preventing preterm birth in the Whole Nine Months.  I would never wish anyone to go through the NICU journey.  It was without a doubt the hardest experience that Robert and I have ever faced in our lives.  That said, if it wasn’t for our journey we would never have met so many incredible people, most of whom I happily call our good friends… eg. Jackson is a little ex 26 weeker who was next to Stella in the NICU from when he was born for a few months.  Side by side they used to cheer each other on.  Three years on and their bond is unbreakable, as is our bond with his parents. Our tiny sparks come in varying degrees of gestational age and sickness.  No one baby is more precious than the other. They are all special, they are all fighters. 

Robert and I 100% support the Tiny Sparks community and the prevention of preterm birth through WIRF and I hope that you all support them to. You never know when you or someone you love will need their support. Thank you for letting me share some of our story with you.

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