When you meet Grace and her mother Kelly, the first thing that you will notice about the pair is the gentle and intimate bond the two share, much the same as a secret language between them, as simple as a knowing through exchanging looks.
It wasn’t always like this. Kelly along with her husband Caleb have navigated their way through raising a daughter with Cerebral Palsy when they were not much older than Grace is now. At the young age of 17, Grace Murphy has accomplished more than her share of triumphs, tribulations and achievements. She’s a savvy business woman, a gentle soul and has certainly not been defined by the term “disability.”
Grace is a young woman who has defied the odds at every turn. She has stood down any limitation in her way and has risen, now approaching adulthood as a strong, determined and creative mind that will succeed at all she puts her mind to.
Speaking with Kelly, you’d be struck by the laid back and gentle nature of a woman who has had to advocate, grieve and nurture her way through motherhood, to emerge as a wise, quietly confident and loving mother.
I had the pleasure of getting to know Kelly over a coffee in the beautiful Merimbula on the Far South Coast of NSW on a cloudy Thursday afternoon.
Whilst this story is ultimately about Grace and her growing business, as a midwife, I took great interest in Kelly’s experience with pregnancy, birth and her postpartum journey with a newborn baby with Cerebral Palsy. Despite the countless and repeated failings of a system that offered no support to the young couple, Kelly has risen and continued with her life, raising her two children with strength, gentleness and patience.
At the age of 20, Kelly and Caleb from the rural town of Cowra, Central West NSW were about to start their family when Kelly received devastating news from overseas. Her mother had visited the local doctor when holidaying abroad, believing she had a chest infection. She had sought a simple script for antibiotics to take with her for her and Kelly’s father’s trip home but received news that would change their lives forever; Kelly’s mother was diagnosed with lung cancer and was given only three weeks to live. In addition to that, the local doctor didn’t expect that she would even make the journey home.
When I asked Kelly about her mother, it was the first time I witnessed the cool, calm and collected demeanour start to crack, just a little. Through a broken voice, she described her mother as the most “wonderful, wonderful, wonderful mother.” It was glaringly evident that the life and death of her mother had a profound effect on Kelly and who she was as a mother and a woman. Watching Kelly with her children, Micah and Grace, it was easy to imagine just how wonderful, wonderful, wonderful Kelly’s mother must have been if Kelly was anything to go by.
Whilst mourning the death of her beloved mother, Kelly was experiencing the joys of early pregnancy and the hopes and dreams that came with starting a family with the love of your life. Little did Kelly and Caleb know that their times of challenges, testing of faith and proving of integrity still lay ahead of them.
When Kelly attended her routine morphology scan, at the halfway mark of her pregnancy, all seemed well. A short time later, Kelly became unwell with what seemed like a serious cold or the flu. A week later, Kelly was still not feeling well, and her GP, Dr Guy Date, tested her for Cytomegalovirus (CMV), a test that at the time was not routine here in Australia. Dr Date, who in time became one of Kelly and Caleb’s greatest sources of support, had chosen to run the test due his experiences with the virus in his home country of South Africa, having witnessed first hand the devastating effects of the illness on pregnant women and their babies.
Kelly recounts that at the time, the beloved GP was criticised for even ordering the blood test and had to seek special clearance to request it, and Kelly had to pay for it out of her own pocket. Jump forward to 2022 and the advances in the field of Obstetrics have seen an enormous growth in the understanding of CMV and the potential disastrous effects it can have on a developing fetus. The simple blood test turned out to give the couple, and their healthcare team, the key to understanding what would soon turn their lives upside down and bring immeasurable fear, heartbreak, joy and determination that would shape who they are today.
At 22 weeks, following the positive CMV result, Kelly was referred to Sydney for further scans and testing. The results determined that her baby was Intrauterine Growth Restricted (IUGR). They would discover much later that their baby would not continue to grow beyond 25 weeks gestation. Admitted to hospital immediately on bedrest, Kelly was faced with an impossible decision. She was offered a termination. Ultrasounds had revealed that her baby’s brain had only one hemisphere instead of two, and not only was her weight too low, but her head was measuring proportionately smaller to the rest of her tiny body. In addition to that, the couple were informed that the amniotic fluid surrounding Grace was far too low and that her pregnancy was barely viable. She was given corticosteroids, to assist with giving Grace’s tiny lungs a boost in development to cope with the outside world. They informed Kelly that her baby would have a 100% chance of being blind, deaf and intellectually delayed, and had been counselled to terminate the pregnancy every day for the past 13 weeks.
Kelly describes that not one word of hope was uttered to her, or her pregnancy. Yet despite this, her and Caleb never gave up.
Miraculously, Kelly brought Grace to 36 weeks gestation. Kelly was induced with labour after her obstetric team found an Amniotic Fluid Index (AFI) Level of 0 and a likelihood of survival, not far from that number either.
Kelly and Caleb, at the tender age of just 20, were told to prepare for the worst.
Grace Murphy was born 1.1.11, making her entrance earthside known, came screaming into life. “Like, proper screaming…” Kelly recalls. Born at just 1.2kg, or 2.65lbs in old money and less than 0.5% for growth, Grace made her presence known. Her screaming would prophesy a life to come.
A life where Grace refused to be limited.
A life where Grace, with the love, nurture and guidance from her parents would grow to defy all of the odds and limitations placed on her.