Sarah's preterm birth story

My name is Sarah, I’ve been a Midwife at King Edward Memorial Hospital (KEMH) for more than 12 years and prior to that I was working as a neonatal nurse at Princess Margaret Hospital.

Witnessing so many natural births and learning from the incredible midwives I was working with filled me with strength and confidence to trust my body during the labour and birth process.

I gave birth to my son in 2016 at the Family Birth Centre, KEMH (where I was working at the time as a Midwife) and had a wonderful pregnancy and a beautiful water birth at 39+6 weeks. 5 hours later we were all tucked up at home in bed together. That experience was whole heartedly the greatest achievement of my life. Although it was intense, I never feared what was happening, had complete trust in my midwives and felt incredibly empowered birthing my baby.

In 2018, I was back working at the Family Birthing Centre (FBC) part time and fell pregnant with our second child. We were delighted and I was so looking forward to giving birth again! I felt well, my pregnancy was again low risk and I was certain that this baby would also be born in the birthing pool with my midwife and husband by my side.

On September 22, 2018, I was teaching a breastfeeding class in the Family Birth Centre, and I was almost 25 weeks pregnant. Apart from having a cold for a couple of weeks prior to this date– I had felt very well and my baby was healthy.

Towards the end of the class, I felt something very odd. I thought I had peed myself! Being the dedicated midwife that I am, I continued teaching the class, and about 5 minutes later, felt another small gush of fluid down my leg. I started to feel very worried at this point, excused my class for the day and ran down to the toilet.

I knew immediately from the smell and consistency that it was in fact, amniotic fluid not urine. I quickly rang my midwife and she was by my side within 10 minutes, meanwhile I was lying in a bed at work, praying that I was mistaken and it was just something else entirely.

When my midwife arrived, she took one look at my soaked pad, looked at me with tears in her eyes and hugged me so very tight.

Before I knew it, I was in Maternal Fetal Assessment Unit, having ultrasounds, being hooked up to medications to help protect my baby’s brain, to stimulate her lungs and to help fight off any potential infection. I started contracting and I began to feel so incredibly overwhelmed and terrified. Before my husband even got there (as he was at home with our 2-year-old son), the doctors were trying to get me to sign consent forms to have an emergency classical caesarean as our baby was breech with the cord presenting. I was in complete denial and have never felt so incredibly helpless.

My husband arrived and they whisked me to Labour and Birth Suite where I was continuously monitored as my contractions were still occurring despite having medications to stop them. I felt so sick from all of the medications flowing through my system and it didn’t help that I was feeling so incredibly anxious.

Every time I got out of bed to use the bathroom, I could feel my heart racing so intensely, as I was terrified of having a cord prolapse and be whisked off to theatre. The midwife would always wait just outside the bathroom door each time that I got up – I could sense the fear in them also.

Just as my contractions started to slow down and I began to feel hopeful... I started bleeding. My team were concerned. And I just wanted to close my eyes and to wake up from this nightmare I was in.

The following day, I was sent down to have an amniocentesis to check if I was developing a uterine infection. I was secretly feeling hopeful, as my contractions and bleeding had stopped. I was certain I could stay on bedrest and keep my baby growing in my belly until full term.

Turns out that I was wrong, and that I had a uterine infection and our baby had to be born immediately via caesarean section.

In a flurry of minutes, I was in theatre, with my husband and midwife by my side. The theatre room and staff all ready to go, but my epidural wasn’t working properly. So, the anaesthetist inserted another epidural. The neonatal and obstetric staff were called back into the theatre room as they thought my epidural was now adequate enough.

Unfortunately, after the incision to my skin, I could feel everything, let out a sharp scream and the anaesthetist put me to sleep with a general anaesthetic.

I don’t remember much after that as I was so drugged up. My beautiful midwife said she even hand expressed colostrum for me in recovery (probably why I had such a great milk supply in the end). I was told that we had a girl, and I ended up having a lower segment caesarean, not a classical caesarean as initially planned (due to my early gestation).

Wendy took me down to see my daughter straight from recovery and my husband was already down there with her. I was still hooked up to oxygen and a lot of IV pain medications, so I don’t remember much.

She was in the NICU and she was so incredibly tiny and fragile, hooked up to monitors, IV fluids and CPAP (continuous positive airway pressure) to help her to breathe with many doctors and nurses working on her. We decided to call her Chloe. A name we both loved, and felt like it was a strong name, for a strong girl. She was born at 25 weeks gestation, weighing 770g.

I still couldn’t believe that this tiny, fragile little baby was in fact mine and that I could barely touch her, let alone cuddle her. My husband was so strong and so positive, and I was just in pure denial for a couple of days.

Not seeing my baby being born was so incredibly hard for me to get my head around.

On day 3 my husband wheeled me down to see her in the NICU and the nurse caring for her was so incredibly kind and knowledgeable and said that I could have a cuddle with Chloe. I was terrified and so hesitant as she was so small, in her incubator and very dependent on her CPAP. The nurse knew it was what I needed, and what Chloe needed – so she got Chloe out and placed her on my chest skin to skin. It was in this moment that I felt like her mother, for the first time. I softened, felt my heart opening, and wept.

Thankfully, my midwife could see that I was struggling with adjusting to having given birth to Chloe at such an early gestation and she suggested that I see one of the psychologists from Psychological Medicine at KEMH. Initially I thought I was strong enough and didn’t need the help, but deep down I knew that this was something that I really needed. I was assigned the most beautiful psychologist who would come and visit me often in the NICU. We could chat and I could still spend the time with Chloe.

For anyone who experiences a traumatic birth, has a baby born preterm or is struggling in any way with postnatal anxiety, depression or PTSD – I encourage you to not be afraid to seek help. For some reason a stigma still remains around mental health and seeking help. You feel like in some way you are weak, not cut out for parenting, not coping like you should. Be rest assured that the wonderful staff in the Psychological Medicine department are truly magnificent humans and will help you to navigate life with a baby in intensive care and the complexities that it brings to you and your family. I could share my fears, my confusion, my anxieties to Yvette and she would give me such practical and reassuring advice. Every visit from her felt like a warm hug to my soul.

Being in the NICU day in day out can feel very isolating and lonely for parents at times. PTSD rates for NICU parents are continually rising, and its something that cannot be ignored, dismissed, or helped by sheer will and positive thinking. You need help. And that’s ok.

Running on pure adrenaline and experiencing daily stressors in the NICU also wreaks havoc on your body. You really need to nurture yourself physically and mentally to get through it and even afterwards when you get home with your baby. When Chloe was about 3 weeks old in the NICU, I was readmitted to hospital with severe mastitis for 4 nights. I was so unwell they initially suspected that I had meningitis. One Doctor wanted to call a code blue on me one morning as she thought that I was septic as my blood pressure was so low. Again, with exceptional care and medicine - I recovered and continued expressing and breastfeeding.

My life for the next 4 months was spent in the NICU with Chloe and managing time at home with my 2-year-old son. Expressing milk for her every 3 hours, being involved in all of her cares (nappy changes, coconut oil massages, taking her temperature etc), and doing skin to skin with her at every possible opportunity. Every time we did skin to skin together, it felt as if my heart was piecing itself back together bit by bit. It is truly such a wonderful way of connecting and bonding with your baby, with so many additional benefits for these tiny little miracles.

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She gave us several ‘scary’ moments, where she would stop breathing, needing to be reintubated and requiring increased amounts of oxygen. She required 3 x blood transfusions, various medications to help with her growth and development, as well as regular eye checks for ROP (retinopathy of the newborn). She had stage 2 ROP and at one stage the Doctors thought she may need laser eye surgery to correct it, but thankfully over time it settled and didn’t require surgery.

We cannot fault the care that Chloe received in the NICU. The medical and nursing staff, lactation consultants and physiotherapists. Everyone goes above and beyond for the care of these tiny and precious little miracles. We felt grateful every single day to live where we do with such exceptional care for our daughter. Being a health professional myself, who has previously worked with preterm babies and delivered preterm babies – on Chloe’s hard days, my mind would often jump to worse case scenario. The staff were so incredibly patient with me, giving me a lot of reassurance and support.

Even though the care was phenomenal, and Chloe was taking small but mighty steps in the right direction... leaving those hospital doors at the end of each day was sheer torture. During those 4 months spent in the NICU, I soon became very comfortable expressing everywhere and anywhere thanks to a hands-free electric breast pump. I would express at the park with my son, driving somewhere and even at a wedding table. My priority was Chloe, and I didn’t care in the slightest what anyone thought. Life challenges like this one makes you evaluate things around you, and how insignificant a lot of things really are. You become pretty fearless as a NICU mum.

I would sometimes look at the NICU stories in the parent’s lounge of babies who were also born extremely preterm and showed photos and stories of them all grown up, smiling and healthy. It gave me hope seeing these stories that so many other babies like Chloe would grow up strong and healthy. That this nightmare would not last forever.

I would also journal almost daily, writing to Chloe, about her progress and growth. Adding in photos of her each day, telling her about her big brother waiting for her at home. It helped me to see how far she had come in such a short amount of time. We would celebrate her milestones when she reached 1kg, 2kg, 3kgs with cakes for the amazing NICU staff. Once she reached about 31 weeks, I was delighted to be able to start breastfeeding her. This process took a lot of time as she was so small and I had so much milk, but with a lot of patience, practice and help from the lactation consultants – she was breastfeeding like a champion!

We couldn’t have been able to support Chloe everyday like we did if it wasn’t for all of the incredible people around us. Friends driving me to hospital every day after my caesarean, family members caring for our son, friends and family bringing us home cooked meals every day for months, and the support from my beautiful colleagues in the FBC. It really does take a village.

Chloe spent 117 days in the NICU at KEMH. She came home 2 weeks after her expected due date, fully breastfed, on no oxygen or monitoring, weighing 3.6kgs. And she breastfed up until she was 2 years of age (which was a really important goal of mine).

Chloe is now 3.5 years old, and by looking at her now you would never be able to tell that she was born at 25 weeks at a mere 770g. She is incredibly bright, outgoing, caring, full of sass and reaching all of her milestones. She is so incredibly strong and resilient which I think is attributed to her strength from overcoming her NICU journey like the little fighter that she is.

There are no words to express how grateful we are for the NICU staff at KEMH, the midwives, Obstetricians, Psychologists, Lactation Consultants, Physiotherapists, patient care assistants, Pharmacists. Even though I have worked in the hospital for so long, I can now see things from such a different perspective. KEMH really is the most fantastic hospital for women and babies, and I doubt you’d be able to find better care anywhere else.

I will never forget some of the small, but incredible acts of kindness that staff did for me. Sitting by my bed with me for hours, praying for me and my daughter, bringing me tea after their shift had finished, playing me my favourite music to help me relax, telling me crazy stories to make me laugh, holding my hair and massaging my back when I was throwing up from mastitis, washing my expressing equipment for me overnight so I could get a little more rest in and simply watching the delicate nature in which the NICU staff handle and care for our tiny babies, so lovingly and gentle. The night nurse who told me over the phone “Chloe says – goodnight mummy, I love you and I will be ok so please don’t worry about me’’.

Don’t underestimate the power behind the small gestures, because for patients and parents, they are the big things, and the moments that they will remember forever.

I am now taking a break from ‘on call’ work, and currently working at the Breastfeeding Centre (BFC) at KEMH as a Lactation Consultant which I absolutely love. If I come across a woman who’s experienced a preterm birth, I feel like I can support them in ways that only another NICU mum would understand. It has changed me profoundly as a person and as a Midwife. I’ve had the opportunity to speak at several study days within the hospital for staff, sharing my experience and giving them information on how to support women experiencing preterm birth, birth trauma and the mental health challenges that may arise from these situations.

Chloe – attends pre-kindy 2 days a week and absolutely loves it. She is a ray of sunshine, loves her family and friends, playing card games, riding her bike, running after her big brother and bossing us around.

It’s taken me quite some time to really heal from all of this. It’s a combination of grieving the pregnancy and birth that you had hoped for, the guilt of having your baby in hospital without you, the pain and guilt of leaving your son at home and reliving those days in the NICU which took your breathe away, from fear of the possibility of losing your child.

Nobody tells you that when you are home with your baby after NICU, the fear is still there. It might not be as intense as when you were in the NICU, but it’s still there, lingering in the corners of your mind. Concerned about every germ that your baby may come into contact with, monitoring their breathing at night in case they have an apnoeic episode... whilst closely monitoring their growth and development at the same time. People continually asking the same questions ‘Is she reaching her milestones!? Does she have any delays?’

Thankfully, it does get easier. And as each day goes by, your baby gets a little stronger, and the NICU experience becomes less and less painful and more of a distant memory.

Sharing my story, helping others navigate their preterm journeys is also very much a part of my own healing journey. Milestones such as her birthday each year can be a little triggering, but ultimately, I am overjoyed when looking down at our daughters smiling face each day.

Each day we look at our daughter in utter amazement and wonder. She is a true miracle, and we know that it’s all thanks to the obstetric and NICU teams at KEMH. Miracle workers and superheroes disguised in scrubs. Thank you all from the bottom of our hearts.

Sarah, Casey, Fynn and Chloe Kocken

Sarah's preterm birth story

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