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By Jessica Cuthbert 

 

In Australia, eight babies are born every day with congenital heart disease and little Nash Spencer, who took his last breath when he was five months old, was one of them.
 
In his five months, Nash showed bravery, courage and put up a tremendous fight. 
 
Detective First Class Constable Tegan Spencer said her son was a true warrior in every sense of the word.
 
Tegan said her pregnancy with Nash was a rollercoaster ride from the very beginning. 
 
Ten weeks into the pregnancy, the results from a NIPT blood test revealed she was expecting a baby girl who had a chromosomal disorder known as Turner Syndrome.
 
She and her husband Jarrad were told that babies with this syndrome rarely make it to full term and that their baby only had a three to four percent chance of surviving. 
 
“We were scanned regularly, always expecting the worst but our baby kept thriving and at the 20 week anatomy scan, we were shocked when the doctor and I both saw a little boy on the screen,” Tegan said.
 
Their baby boy had Mosaic Turner Syndrome. 
 
110156947 3443022915789362 9129508372962090932 nDoctors said it was now likely, their baby would make it the full term but his condition was extremely rare.
 
“They said they couldn’t tell us what to expect,” Tegan said. 
 
“It was around that time that we learnt our baby boy also had several severe heart defects. Half of children born with Turner Syndrome have left sided heart defects so this is where Nash’s issues stemmed from.
 
“The doctors told us our baby was going to require surgery immediately after he was born and from then on, our pregnancy became high risk.” 
 
Tegan said the second half of the pregnancy was difficult and filled with fear and anxiety not knowing what the future had in store for them or Nash. 
 
Little Nash was born on September 28, 2019 at King Edward Memorial Hospital.
 
“He was more perfect than we could have ever imagined. But before we could hold him or even bond as a family, Nash was whisked away to the Neonatal Intensive Care Unit (NICU) of Perth Children’s Hospital where he would await his first open heart surgery in his first week of life,” Tegan said. 
 
Following his surgery, doctors informed Tegan and Jarrad they found an extremely rare defect in Nash’s heart, further to the ones already known.
 
Nash’s heart defect was so rare that it is only reported to occur in one in six million live births. 
 
“Not many parents can say that they’ve seen their child’s heart but for the next eight days after his surgery, Nash’s chest remained open to allow for swelling and it became our daily norm to greet Nash and his heart every time we were with him,” Tegan said. 
 
The ICU soon became home to the Spencer family for the next month while Nash recovered from the mammoth surgery.
 
110202865 633944790584664 4318138498237754499 nAfter a few weeks, Tegan and Jarrad were able to take their son home. 
 
The excitement however, was short lived as Nash was home for only 10 minutes before he experienced breathing difficulties and was rushed back to Perth Children’s Hospital. 
 
After some time recovering in hospital, Nash returned home for the Christmas holidays.
 
Tegan said they will be forever grateful for those weeks spent at home because on December 29, Nash was back in hospital.
 
“It was unknown to us at that time, but we wouldn’t be bringing him home again,” she said. 
 
“The following morning, we were told the devastating news that the condition of Nash’s heart had changed rapidly, and he would need to have a second surgery which was going to happen the very next day. 
 
“Before we really had time to process anything, we handed our boy’s life over for the second time and spent our New Year’s Eve waiting for him to come out of his second open heart surgery in less than three months.” 
 
Nash spent the next four weeks of his life in the ICU where he underwent a third surgery, it would also be his last four weeks.
 
110186253 294977425148788 515794566964003034 nTegan said despite everything his little body endured, he would still light up a room with the biggest gummiest smile you’ve ever seen.
 
“Despite everything, he still had an unbelievably sweet, calm and loving presence about him,” she said. 
 
“He had the biggest blue eyes that would look into your soul and make you wonder if he’d lived another life before this one. His eyes would follow you around the bedside and not one nurse or doctor could do something without him watching.” 
 
On February 11, 2020, Nash took his last breath. 
 
“Our brave little warrior who in five months, fought bigger battles than most people will fight in a lifetime,” Tegan said. 
 
During those terrifying and unfamiliar five months, the Spencer family were supported by HeartKids, a national charity dedicated to supporting children, teens and adults affected by congenital heart disease. 
 
 “They were incredible in providing the support we needed to find our feet and get through what would be the most challenging time of our lives,” Tegan said. 
 
From continuous support and guidance, to morning teas with other families who had loved ones with congenital heart disease, HeartKids provided a platform of support. 
 
In Nash’s last few days, they had also arranged for moulds to be taken of his hands and footprints as well as some jewellery that Tegan said is now the most precious keepsake. 
 
“These were things that we would never have had the time or energy to organise ourselves with everything else going on but is now something we treasure,” she said. 
 
“HeartKids was that second family within the hospital that you could rely on to be a face away from the hospital bed that you could have a chat to if you just needed to get away.
 
 “Since Nash has passed, we still keep in touch with HeartKids regularly.” 
 
Tegan said she sometimes wonders how they would have coped without the support from both HeartKids and the other families they met along the way. 
 
“I imagine it would have been a much lonelier journey and more frightening than it already was, had we not had others to talk to that knew exactly how we were feeling and could provide us with reassurance and coping strategies when we needed them,” she said. 
 
110151861 941287489668367 820296727327541147 nNow, Tegan is encouraging others to take part in the upcoming HeartKids charity walk, Two Feet and a Heartbeat this October. 
 
The annual Australia-wide event raises awareness for congenital heart diseases and funds for life saving research. Congenital heart disease is the most common congenital disorder in newborns and is the leading cause of death in Australian babies.
 
Tegan said the charity walk is an opportunity for affected families to come together for one day and remember the little ones who lost their battles and celebrate the children who are still fighting. 
Tegan said she has been overwhelmed by the support she has received from the Blue Family. 
 
“The Blue Family have been incredible since the passing of Nash and even before. During my pregnancy with Nash, my OIC, supervisors and staff were amazing with all the time I would need to take off for scans and medical appointments,” she said. 
 
“The support that both Jarrad and I have received since Nash passed has been absolutely overwhelming and we are forever grateful.” 
 
Unknown to them at the time, the team at Fremantle Detectives started a fundraiser for Tegan and Jarrad to assist with any financial pressure.
 
Tegan said support came in the form of flowers, messages and phone calls. 
 
“The Police Union also contacted us to arrange payment for Nash’s funeral which we were absolutely blown away by and something we never would have expected. It’s something we won’t ever forget,” she said. 
 
Both Tegan and Jarrad encourage other to participate in the Two Hands and a heartbeat Walk or donate if they can, saying even $10 can go a long way. 
 
“Jarrad and I would never have thought that we would be parents of a child with a complex medical condition, let alone the parents of a child that lost his fight to this condition but here we are,” she said. 
 
“Life can change in an instant and anyone could find themselves in our very position after one horrible diagnosis at a scan.
 
“To families that have a lost a child, we are only new members of this club that no one ever wants to join but we have found ourselves with a lifelong membership. We were told at the very beginning by another set of parents that had lost their baby that the first year is the hardest. 
 
“Seek out the support that you need and don’t judge yourself on your grieving process, try to be kind with yourself. Grief comes in waves and is very unpredictable.” 
 
Although little Nash is no longer physically here, Tegan said he will forever and always be on their minds. 
 
“We hope he knows that he was worth all the pain, just to know him, to hold him and to love him,” she said.
 
“We hope he knows that a big part of us went with him when he left and we hope he knows that he has completely altered the course of our lives in the most beautiful way, he has made us better people.” 
 
The Two Hands and a Heartbeat Walk will take place at Burswood Park on Sunday October 18. 
 
To donate or register for the event follow this link.
 
 

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