Developmental Observer  •  2020  •  17  

FA M I LY  V O I C E S

Column Editor – Debra Paul, OTR/L 

My Little Warrior
Tracey Azzopardi

Going to be a mum

I was always focused on my career. After six years from working 
overseas in Hong Kong, Shanghai, and London, I came home 

to Sydney to have a baby. Having a baby was the one thing that 
I had always wanted. At 43 and after four rounds of IVF with an 
anonymous donor, I was ecstatic to find out I was finally preg-
nant. I was going to be a mum. 

23 Weeks~The roller coaster begins

Where to begin. It was still early. I hadn’t yet started ante-natal 
classes or visited a maternity ward. I still had plenty of time to 
get ready for childbirth, or so I thought. Little did I know it was 
the start of an unexpected roller coaster journey of uncertainty 
and emotions. 

While on my way to work 23 weeks into my pregnancy, I 
didn’t feel right so I visited my obstetrician. Several hours later 
with ruptured fetal membranes, my doctor explained that it was 
vital I deliver at a hospital with a neonatal intensive care unit. 
Thankfully Westmead Hospital had a bed because later my baby 
would need the Grace Centre for Newborn Intensive Care at the 
Children’s Hospital at Westmead. I was transferred by ambulance 
to the Westmead Hospital which was only one street away and 
taken to the delivery suite. 

The following day I had an ultrasound. I could not see the 
monitor that the three doctors were looking at. Clearly, some-
thing was wrong. My baby had moved from being ready to de-
liver to being transverse and the umbilical cord wrapped around 
my baby’s arm. My baby could not move. That afternoon one 
of the Fellow’s from the  Newborn Intensive Care Unit (NICU) 
came to sit with me. She was a kind and gentle doctor who took 
the time to listen and help me understand what was going on 
and the options available. The doctor explained the probability 
of survival and the ramifications of a delivery at such an early 
age. We were at 23 weeks and one day, and every day counted. 

What was going to happen next? I was told that one of 
three things would happen: contractions would start, my baby’s 
heartbeat would slow, or infection would set in as there was not 
much amniotic fluid. I was started on antibiotics and my baby’s 
heartbeat was checked three to four times a day. Thank goodness 
for my mum who was with me every day. Confined to bed, I 
hung on to hope and stayed focused on the positive.

Delivery at 24 weeks

Seven days later while lying in the hospital bed, I experienced 
rigors and within minutes, several members of the medical team 
surrounded my bed. Antibiotics, steroids and vitamin K were 
injected, blood tests were taken, and I was put on oxygen. My 

obstetrician and I had a very quick discussion. As much as I 
wanted to experience childbirth, the only thing that mattered 
was giving my baby the highest probability of survival, which 
meant my baby being delivered by emergency caesarean. Before I 
knew it, I was in the theatre and there were people everywhere. 

It’s a girl!

I woke midday the following day. The nurse asked me if I knew 
where I was and I said yes. Then I asked, “My baby…is my baby 
alive?” Her answer was yes. I then asked, “What did I have?” 
She responded with “you had a girl.” It was a surreal and joyous 
moment that I will never forget. 

Meeting my baby

Taken by wheelchair to meet my daughter, I was excited and 
scared at the same time. She was born at 24 weeks and 1.5 hours 
weighing 590 grams and required resuscitation and intubation 
at birth. Being wheeled into the NICU and meeting my baby 
was overwhelming as she was in a humidicrib and there were 
wires and tubes everywhere with multiple pumps and machines 
beeping.

Tracey Azzopardi with her daughter, Matilda

DOI: 10.14434/do.v13i1.29091



18  •  2020  •  Developmental Observer

My baby was so tiny. It was hard to believe. The nurse ex-
plained containment holding and where I could place my hands 
on my daughter. Needless to say, I did a lot of containment 
holding. 

Picking a name

Upon meeting my baby girl, giving her a name was an easy 
choice…Matilda. The meaning of her name is quite significant 
and means might and strength in battle. This tiny human had 
many battles ahead. 

On-going challenges

In the following four weeks after Matilda’s birth, she faced 
serious breathing and lung issues. Her x-rays showed lungs that 
looked like they were covered in clouds and she was given two 
rounds of steroids to clear them. Matilda’s heart valve had not 
switched over until a day after her second round of treatment. 
Everything seemed to take a little bit longer.

Too fragile to hold, for the first three weeks of Matilda’s 
life I placed my hands gently on her through the crib’s doors. 
After three weeks, I held Matilda for the first time for one hour. 
It was our first skin to skin and it was sensational. As Matilda 
got stronger, I was able to hold her for longer periods. Skin-to-
skin or Kangaroo Care was the most precious time I had with 
Matilda. Transferring Matilda out of her humidicrib was done 
with extreme care. It took a bit of organising and required three 
nurses. As soon as I would arrive in the morning, I would touch 
base with Matilda’s nurse, find out how she was overnight, and 
what was scheduled for the day. Together the nurse and I would 
figure out the best time for skin to skin. During skin to skin, 
Matilda’s breathing would always be at its best with minimal 
destats. I made it my mission to do as much skin to skin as 
possible. Our record was 6.5 consecutive hours. Typically, I 
would usually do 3 hours each day. 

Surgery

On day 28 I arrived to find out that Matilda needed a surgery 
consult. All I heard was the word surgery. They were going to cut 
my tiny baby open. Preparations were underway without delay 

and Matilda was transferred to The Grace Centre for Newborn 
Intensive Care at the Children’s Hospital, Westmead in Sydney. 
A battery-operated motor was attached to the humidicrib to 
power the CPAP and pumps, and Matilda was transferred via a 
tunnel that connected the two hospitals. 

Grace is a surgical NICU, and without a doubt one of the 
best in the country. Upon admission, tests, x-rays, examinations 
and so on, a surgical team arrived. The medical team was standing 
two deep around Matilda’s humidicrib. Then the surgeon arrived 
and examined Matilda and there was rigorous discussion. He 
introduced himself and explained that after examining Matilda 
he could not guarantee, however was quite sure he knew what 
was going on and that there were no tests to confirm it. The only 
thing that could be done was to go in and have a look. I listened 
carefully. The surgeon was very clear. There was no doubt how 
serious it was as Matilda was so distended. She was 28 days old 
and weighed 790 grams and had already been through so much, 
yet needed this surgery urgently. Once the surgery was over 
the surgeon confirmed that Matilda had NEC or necrotising 
enterocolitis and showed me a diagram. In total, 28 centimetres or 
approximately a third of Matilda’s bowel was removed.

Progress measured in baby steps

Post-surgery the darkest green bile kept coming out of Matilda’s 
oral venting tube for weeks. One of Matilda’s neonatologist kept 
reminding me, Matilda runs on her own time table and we need 
to patient with her. I’ll always be grateful for the generosity of 
his understanding and ability to explain things and manage my 
high expectations. Two weeks after Matilda’s surgery, she started 
on one millilitre (ml) of breastmilk over four hours. Every two 
days we slowly increased her milk by 0.5 mls per hour. It was a 
slow progression. When Matilda’s target was reached, we then 
had to transition from the four-hour cycle via continuous pump 
to regular feeds every four hours that I would be able to do via 
gravity feeding at home. 

Taking each day as it comes

Two steps forward and one step back was the term commonly 
used. Taking one day at a time is the only way to go and not 

Too fragile to hold, for the first three weeks of Matilda’s life, Tracey placed her hands gently on her through the crib’s doors



Developmental Observer  •  2020  •  19  

get ahead of yourself. I refused to go online and read blogs 
etc. If I had a question, I would put it in my phone and ask 
the appropriate person on Matilda’s medical team. Attending 
morning and afternoon rounds meant I was always up to date 
and knew what was going on. It was important to learn how the 
NICU worked, who was who, and how to find out information 
or escalate concerns. 

A month before coming home, Matilda’s nose was finally big 
enough to have the smallest size nasogastric tube (NG) fitted. 
Without any tubes in her mouth, during skin to skin with the 
support of the Speech Therapist and Lactation Consultants, we 
persisted in encouraging Matilda to latch on and breastfeed. 
They would put the stethoscope behind her ear, counting how 
many sucks and swallows she had. Matilda was sucking, but 
rarely swallowing. Our plan was to keep trying. I really wanted 
to breastfeed believing it would be the best thing for Matilda’s 
gut and growth as she was still very tiny. My persistence was 
worth it as I breast fed Matilda until she was 17 months when 
Matilda was able to use a sippy cup.

Developmental rounds and individualised 
developmental care

I would be so disappointed if I missed the Developmental 
rounds. There were usually three specialists who would assess 
each baby and give recommendations to the nursing team. What 
may seem like something small to some, the recommendations 
for Matilda had a significant impact on her. 

I was approached about carrying out an assessment to review 
and develop an individualised developmental plan for Matilda. 
This was exciting. Anything that we could do to help Matilda 
to make her as comfortable as possible and that supported 
her progress was a great thing. A group of professionals going 
through training observed a nurse and I doing Matilda’s cares. As 
I was shown, I would always start from Matilda’s head and work 
my way down to her feet.

The written report I received following the observation 
was brilliant. When changing Matilda’s nappy and undoing the 
Velcro tabs, her body would flinch and her facial expression 
would change. When these observations were shared in the 
report and I read it, I modified the way I changed Matilda’s 
nappy. The report provided instructions for all of Matilda’s 
team to follow. One of the trainees on the Developmental team 
suggested I prepare a shorter version of the report as if it was 
written by Matilda. It was then attached to the end of her bed 
for all of her nurses to follow. 

Reflections from our NICU experience

There was a night or two when I got all the way to the car 
park and had to walk back to the NICU. Leaving your baby 
is a challenge. The best thing to do is focus on getting home, 
eating and sleeping, staying as healthy as possible and seeing and 
holding them the next day. 

Helping my daughter’s voice be heard

Being Matilda’s advocate and voice…that is what mums do, 
right? It is a balancing act. Being respectful of the medical team 

is really important. At the end of the day or evening, you have to 
leave the NICU and leave your baby in the care of this team and 
trust is really important. 

Going home

After spending 161 days (5 ½ months) in the NICU, Matilda 
was discharged in early December 2017 weighing 3.3kg. For ten 
months following discharge Matilda required home CPAP and 
was connected to a mobile corometrics monitor for obstructive 
sleep apnoea whenever she was sleeping. 

The year following discharge was full of appointments 
and therapy. The combination of attending a feeding clinic, 
physiotherapy and occupational therapy were all very beneficial. 
We put everything we had learnt in the NICU into practice 
at home. She will have glasses in the near future. Matilda has 
Chronic Lung Disease and will continue to be monitored. Whilst 
Matilda is delayed and in the low average range for her language, 
cognitive and gross motor skills, we continue to focus on these 
areas and I have no doubt that she will continue to improve. She 
is making great progress with her fine motor skills. Matilda loves 
books and has them everywhere. We do a lot of reading. 

Gratitude

There is no doubt Matilda is alive and doing so remarkably well 
today due to the care she received from the moment I found out 
she would be arriving early, and throughout her entire journey. I 
remain forever grateful and indebted to every person who cared 
for Matilda and for their amazing skills, patience and empathy. 
They were a dedicated team of people who worked together and 
truly cared for Matilda. 

Matilda is now two and a half and is a very resilient, 
determined, happy and joyful child, who has made amazing 
progress and continues to thrive. She is truly loved and I am 
fortunate to have such an amazing daughter.

We thank Tracey Azzopardi, Matilda’s mother, for sharing her 
story, and Matilda’s journey with us.

Tracey says Matilda is a very resilient, determined, happy and joyful child