‘Heart baby’ families’ amazing outpour of love and courage
BABY their own stories of living with Congenital Heart Disease (CHD).
As HeartKids, the national charity supporting parents and children with CHD, prepares to launch its February awareness campaign, parents took to social media with prayers and love and hope for others navigating the diagnosis.
Emily's parents Pascalle Plug and Terry Welch went for a 'routine' scan at 20 weeks and within an hour their whole world had fallen apart. It took the support and care of medical staff, family, friends and the HeartKids charity to help the couple find their "own normal".
Their story rang true for many who opened up about their own experiences on Facebook.
At 37 weeks pregnant Rachel Petrie told others her baby had been diagnosed at just 12 weeks gestation.
Amieka Bourdon recalled her son's birth 15 years ago.
"It wasn't picked up on a scan and it wasn't till I delivered him that they found something wrong.
He is now a very strong healthy young man.
He has a leaky valve on left side of the heart and pulmonary stenosis and a residual VSD from the larger one that as patched at his 1st surgery. But has no effects from these issues."
Hopeful stories of little ones with the same TGA (Tranposition of the Great Arteries) diagnosis as Emily emerged.
Sharing stories of heartfelt thanks to doctors and medical staff, they recounted how it was the "ordeal that never leaves you".
That even years later, parents "watch and wait"
Some spoke of other residual health issues.
Kalinga baby Emily Welch was diagnosed with TGA (Transposition of the Great Arteries) at the couple's 20 week scan.
For parents Pascalle Plug and Terry Welch and little sister Gabby, each day has been taken one step at a time, some beginning with tears and others gratitude for Emily's safe arrival and successful surgery at just 10 days old.
Now home, the family knows Emily's heart story has just begun, a sentiment told many times over as family and friends' shared their CHD stories on Facebook.
Rebekah Donaldson said: "the doctors concern now is to have him in the best possible health for when he has to pass him onto a new cardiologist when he turns 18. My son is 15 in April.
It's been a long journey as he has adhd and an intellectual disability as well but when I look at him. I'm so proud of the young man he is becoming and how lucky we are for the RCH."
Anona Cooper's story began when her son was six days old, a midwife picking up that "he was quite blue and his heart sounded racy. Thank goodness she sent us to hospital that same day to check for clicky hips as he was born at home, feet first!!and for them to check his heart, unbeknown to us he was in heart failure and would have passed that night. His oxygen stats were 35 %!! They inserted a balloon to open the ductus then did the switch when he was 10 days old. He is just about to turn 10! has just attended brave hearts camp last week."
They shared prayers for strength and courage.
Lynda Thompson, whose grandson is six months old and has HLHS (Hypoplastic left heart syndrome), offered support for another parent on the same journey.
"It is the hardest thing in the world to go through. Praying for strength & courage for you all."
The sadness and spirit of the CHD family was evident as family reached out to one another sharing their grief and loss, their disbelief and strength.
Anita Mason recounted "Our HK Xavier was also diagnosed with TGA, he also had HLHS, with pulmonary and sub-pulmonary valve stenosis.
We were lucky enough to have it picked up on his 20wk scan and first op was 2 days old, which failed, then another at 4 days old, then 11 months old and then 4 yrs old.
He just turned 14 at the beginning of the year- actually, 14 years ago tomorrow we arrived home for the first time with him.
We have a major check up in 4 weeks and I'm slightly nervous."
Angela Harris said: "my daughter has one of the most severe cardiac conditions there is
She has HLHS and a lot of other cardiac conditions to go with it. She is now 11 months old and we have been told to cherish every moment with her."
HeartKids is the only charity dedicated to supporting families affected by CHD, they rely on fundraising to provide vital support and programs to help families like Emily, Gabby, Pascalle and Terry.
HeartKids' annual awareness and fundraising campaign - Show Your Heart - kicks off in February.
A HeartKids spokeswoman said during February the charity was aiming to raise $650,000 towards one-on-one support for parents with children undergoing heart surgery or going through treatment.
"With almost no government funding we can't provide this without your help," the spokeswoman said.
To help or donate contact www.heartkids.org.au/showyourheart
CONGENITAL HEART DISEASE CAN INCLUDE THE FOLLOWING ABNORMALITIES:
Aortic Valve Disease
Atrial Septal Defect (ASD)
Atrio-ventricular Septal Defect (AVSD)
Coarctation of the Aorta
Cyanotic Congenital Disease
Mitral Valve Disease
Persistent Ductus Arteriosus (PDA)
Pulmonary Valve Disease
Ventricular Septal Defect (VSD)
Single Ventricle Pathology
Tetralogy of Fallot (ToF)
Transposition of the Great Arteries (TGA)
HeartKids is the compass to help navigate the lifetime journey of the 64,000 Australian children, teens and adults affected by congenital heart disease. Our aim is to help them -and their families - to lead the most fulfilling life possible and to reach their personal goals.
We are the voice for all people impacted by congenital heart disease - the largest cause of infant death in Australia.
Our work is focused on our four pillars of Advocacy, Information, Research and Support.