Follow Up Guidelines for Comment

We’ve been working with a big team of people from all over Australia to write a new Guideline for Follow-up Care for Young Children Born Very Preterm. We know they are at increased risk of life long challenges and we also know that early intervention is critical. Unfortunately there has been no uniform approach to follow-up programs around the country. This new Guideline hopes to change that.

The Guideline is now in Draft phase and open for public comment. We welcome all people born prematurely, caregivers, clinicians, allied health professionals and other interested parties to reach the Guideline and provide feedback. More information can be found here:

FREE Milestone Cards

FREE Milestone Cards Are now available to download and print at home!

Huge thanks to our HBF Run Team for making this possible!  We can’t wait to see the display boards hanging in units and parent lounges of Perth Neonatal Units very soon. This will make it easy for parents to access cards as they need them to celebrate every small achievement of life in NICU.

We just LOVE celebrating right along with our families and welcome you to tag us on your social media if you are sharing images @tinysparkswa #tinysparkswa With 36 different cards available there is one for almost every big achievement!

This is just one of the ways we are supporting Western Australian families living life in the Neonatal Unit.

Hop over to the dedicated Milestone Card page to download your own set today.

Grace's Story

Written by Mum Allyson.

Grace was my fifth pregnancy, having had one miscarriage at 12 weeks in between my first two children. I had three sons; 5 ½, nearly 3 and 15 months when Grace was born. My pregnancy had been difficult with regular bleeding and a hemorrhage at 18 weeks where I felt I had lost my baby but scans showed that I still had a fetus. 

Grace when she arrived at King Edward.

I was on the last day of 23 weeks when I felt strong pains in the evening. I went up to the Albany Hospital and they gave me Ventolin to stop the labor. Initially I didn’t realise it was labor as I was induced with my boys. That seemed to settle so by 9am the next day when my husband, Richard, bought the boys to see me, everything seemed to be okay. By Midday my labor had progressed remarkably and I was being prepped to fly to King Edward as they thought the baby would be born soon. 

We were transferred to the awaiting Royal Flying Doctors airplane. The engines were going and Richard was being strapped in when my waters broke. The RFDS Midwife made a lifesaving call when she said I would be transferred by ambulance back to Albany Regional. It took them a very short time to get me back to the hospital when Grace was born encaul at 3pm on November 26 1997. She was just 24 weeks gestation and a very tiny little girl (585gms). The three doctors and one midwife decided to do everything they could to support her survival as they have since told me that she looked strong and healthy enough to try.

The hospital was not equipped for such a tiny infant and a friend has told me that all available staff were called to cut down tubes to help with her survival. There was no ventilator, so when they had successfully intubated her my GP spent just under six hours hand ventilating her. They called the Neonatal team who arrived by RFDS just before 9pm who stabilised her, which took quite a while and then flew her up to KEMH. I was told that up to 4 aircraft were involved in her birth and transfer. Regional families could not survive without the RFDS.

Grace spent 10 weeks on a ventilator and took two months to reach one kilogram. She was discharged after 4 ½ months from the nurseries at KEMH in April 1998.

This year she turns twenty and has done incredibly well. She graduated high school last year and is currently working at Bunnings for a Gap Year before she goes to Perth to study Social Work. Her plan is to work with the families of Pre-mature babies at King Edward or Princess Margaret.

I support Tiny Sparks WA and all the work they do because I have walked the journey of having a baby prematurely without support and being from the country it is even more isolating. I would have loved to have the nurture and encouragement that they offer to families when we were going through the difficulties that only those who have been through it can understand.

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We welcome families sharing their stories on our blog.  If you would like to share your story please send approximately 500 words and a few photographs to admin@tinysparkswa.org.au with the subject 'Family Story'.

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.   

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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. 

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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. 

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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.

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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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