Twins Levi and Konrad Maaka may look similar, but on the inside they are very different.
While they may act like typical 8-year-old boys playing with wrestling figurines, in reality, they have faced much more than other children their age.
Levi has a congenital heart defect called tetralogy of fallot, which has resulted in holes in his heart, narrowing arteries and valves that do not close properly.
Due to his extreme prematurity at birth, his bowel has required ongoing surgery.
At just 9 days old, Levi had his first bowel surgery, and had his first heart surgery a week before his first birthday.
In total, he has had 79 major surgeries and procedures, including open-heart surgery.
While Konrad has no health issues, it has been difficult to see his brother in hospital.
Levi is one of 500 children in Otago at present with a congenital heart defect.
The twins were born 26 weeks premature and instantly their mother Nicole Maaka knew there was something wrong with Levi.
‘‘From day 1 he’s just had a lot of problems,’’ the mother-ofthree said.
While the focus was on his bowel in the early days, Ms Maaka knew something was not right with his heart.
‘‘The moment he came out, he was blue,’’ she said
She pushed for tests to be done and finally, when he was 4 months old, his heart condition was discovered.
‘‘By then the damage was pretty bad.’’
Levi spent the first year of his life in hospital and has undergone multiple procedures every year since.
And it is not over yet.
He will need another cardiac surgery to cover the hole in his heart again, get an artificial right pulmonary artery put in and repair his valve. He has already had surgery to put in an artificial left pulmonary artery.
‘‘It’s not going to stay at this heart surgery,’’ Ms Maaka said.
That will depend on how well his body deals with the surgery.
Levi’s heart condition makes him more tired, as there is less oxygen going to his lungs and his body. It also makes him more susceptible to infections.
His bowel drains much of his energy which makes his heart work 10 times harder than it should be, which causes the veins in his face to ‘‘light up’’ when he exercises.
‘‘That happens all the time because his bowel’s taking over.
‘‘It does only takes a split second for him to turn.’’
Although Levi knows his physical limitations, it can be hard when his friends are able to do things that he cannot.
‘‘He’s seen that they can go and [play] sports and they can do whatever they want and he’s always got the thing that’s holding him back.’’
The Maakas are just one of the families that are supported by the Heart Kids charity.
On Wednesday next week, they, along with the pupils at Wakari School, will wear red and give a gold coin to raise money and awareness for HeartKids.
It is the first year the event has been held and Ms Maaka encouraged people to donate what they could.
‘‘[HeartKids needs] the money just to help kids like myson and families like mine.’’
Heart Kids fundraiser
While a heart usually symbolises love on Valentine’s Day, this year it will have another meaning.
On February 14, Heart Kids is encouraging people to wear red and give a gold coin to show their support for children born with a congenital heart defect (CHD).
CHDs are the most common type of birth defect and each week 12 babies in New Zealand are born with one.
Heart Kids lower South Island reginal family support coordinator Marlene Du ToitParks said the event was about raising money and awareness about the condition.
HeartKids Otago did not receive government funding so ‘‘even a little bit of money through this event is helpful’’, she said.
Ms Du Toit-Parks said having a child with a heart condition could be ‘‘hugely traumatic’’ for the family, so the charity was there to look out for them.
‘‘There’s a lot of need and there’s a lot of support that we can offer but it just takes time and resources.’’
Any money raised goes into supporting and helping families.
Nicole Maaka, whose son Levi has a CHD, said HeartKids Otago staff went ‘‘above and beyond’’ to look out for her family.
Ms Du Toit-Parks would often arrange for Heart Families in Dunedin to get together to ‘‘create a community’’ where they could talk about their experiences or just spend time together.
Ms Maaka said there was no pressure to talk about what their family had been through.
‘‘It’s more getting the parents and children together and let them feel comfortable and just to be themselves.’’
