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“Probably the biggest thing we appreciate from Heart Kids is the community that it builds.”

Siobhan and Malcolm’s journey with Heart Kids NZ began weeks before their son Arthur was born. Multiple scans had revealed Arthur had a heart condition, and they were unsure where to turn. After receiving a Heart Kids NZ brochure in hospital, they reached out saying they had just received Arthur’s diagnosis and needed some support. “Obviously it was very shocking news at the time.”

It was the beginning of a connection with Heart Kids NZ the couple say has helped them through some tough times. “I think the biggest thing we appreciate from Heart Kids is the community that it builds.” Arthur is now a super confident, friendly 2.5yr old, whom Dad, Malcolm says will give anyone a high five. “He is very much a typical boy,” Siobhan says. “He’s really into anything with wheels. He loves riding his bike. He loves toy cars, and he likes climbing everything, he’s a very cheeky little boy.”

Arthur was born after Siobhan was induced at 38-weeks pregnant. It was a good birth, Siobhan says, and Arthur was breathing on his own. This meant Siobhan got to hold him and they spent five minutes with him before he was taken to NICU.

Arthur was born in December during a period of Covid restrictions at Starship and the visiting restrictions added extra stress. Siobhan says Arthur had several issues with his heart, which is not unusual for a heart baby. Put simply, Arthur’s left ventricle is pretty good, but his right one isn’t. He also has a large hole between them. In technical terms Arthur was diagnosed with a double inlet left ventricle, L-TGA, severe coarctaction of the aorta and moderate ASD, moderate tricuspid regurgitation, left pulmonary artery stenosis, idioventricular rhythm and episodes of second-degree heart block.

His first surgery was planned for when he was four days old. Siobhan says the operation went well and Arthur’s recovery started off okay, but he contracted sepsis which drastically slowed down his recovery in PICU. His feeding and weight gain ended up being the main factor in the length of their hospital stay though and it was almost 10 weeks before they got to take him home.

Once home, Arthur was monitored daily and weighed to ensure he was gaining weight. Siobhan said when Arthur stopped putting on weight consistently and grew very tired it was a red flag, and a decision was made to admit him to hospital. It was a fortunate decision as he deteriorated the night he was admitted and had to be put on oxygen.

Siobhan says this was a week before Arthur turned five months and was in line with when doctors had estimated Arthur would need his second surgery, so it was only brought forward a couple of days. Before the operation Arthur’s surgeon said Arthur’s heart had started to enlarge, and he would need a pacemaker fitted as well. Following that surgery Arthur’s surgeon called to say he had crashed, and they had to give him three minutes of cardiac massage. What followed was a hugely stressful time where every time Arthur was stabilised, he crashed again. It was a period where they feared they might lose him.

Eventually, largely thanks to a nurse, they discovered Arthur was not reacting well to the way his pacemaker was programmed. Thankfully, after reprogramming and tweaking his pacemaker Arthur was able to go home after two weeks. Arthur’s next planned surgery will be this summer, and then it is a matter of waiting to see when he will need any further operations.

Siobhan says the help they have received from Heart Kids NZ has been a big support. After reaching out to Heart Kids NZ before Arthur’s birth their family support taituarā, Montee, sent them a care package and checked in with them. Initially, because of Covid, they couldn’t meet in person. However, when they were out of hospital restrictions eased and Heart Kids NZ started holding their meet ups again. “We got to meet a lot of people in our area and the Heart Kids NZ support workers.” Between surgeries Arthur’s health was very fragile so Siobhan says they didn’t go out that often, but they always went to the Heart Kids NZ gatherings because they needed connection. They knew it would be safe for Arthur as other Heart Kid parents wouldn’t bring their children if they were sick. “It’s a lot lower risk than other social interactions.”

Since then, they’ve regularly attended the coffee meet ups. “We just found the people at Heart Kids have so much automatically in common that you can talk about, and they understand. Everybody knows each families journey is so different, but it is all quite similar as well in a lot of ways.” The support other Heart Kid families provide by providing meals, baking or looking after children when you need it is also invaluable. “It’s just a really non-judgemental supportive group of people.”

Siobhan’s mother has also got involved by knitting booties. When Arthur was in hospital, she knitted booties that had holes at the back to allow for monitoring wires without the booties falling off. She has kept making them and donating them to keep other Heart Kids’ feet warm.

The other important thing about Heart Kids NZ is that Arthur will get to grow up with children around him who are going through similar experiences to him and have similar mental and physical challenges to face, Siobhan and Malcolm say. “We’ve always talked amongst ourselves how important we think that it is that he grows up with other kids like him, so he doesn’t feel different and has other people that truly understand him and what he’s enduring”.

“They are all part of this little community of Heart Kids themselves,” Malcolm adds. “It’s a life-long mission. It’s not just treated and then you can forget about it. It’s always going to be an aspect of his life.”