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► Children's Profiles |
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Children's Profiles
Jake
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The first indication that something was not as it should be came during Jake’s two week check up with the local Plunket Nurse. “I see enough healthy babies to know that this wee man is not,” she said. These words would be remembered fifteen years on, as clear as the day they were first spoken, for they mark the very beginning of Jake’s heart journey. |
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Jake was diagnosed with several major heart defects. Defects so complex that doctors gave him just one week to live. For Jake’s parents Karen, Jeff and their family the news was devastating. Shocked and stunned they wondered how something so beautiful and innocent could have all those things wrong with their heart.
With surgery not an option Karen and Jeff took their baby home to enjoy the time they had left. The days came and went and to everyone’s surprise Jake continued to live. At five months old Jake was still at his birth weight. He was fed by a nasal gastric tube and an electric pump. He was also on oxygen but he was very much alive.
The family drew strength from Heart Children New Zealand, Heart Children Canterbury Branch and the families they met there. Over the years the organisation would play a vital supportive role in Jake’s life and for the family as a whole.
The days came and went and Jake continued to amaze the medical fraternity with his incredible will to survive. It was decided that Jake would be given the option of surgery. For the next thirteen years Jake would make continued trips to Auckland Hospital for numerous procedures and open heart surgeries. Over the years there have been good days and bad days, for Jake and his family, each and every one defined by childhood heart disease.
At four years of age Jake started kindergarten. He couldn’t manage kindergarten every day. On the bad days his skin was tinged with blue due to the lack of oxygen and he had no energy to play with the other children. The days he made it there were good days. He loved playing with his new kindy friends.
The day Jake turned five and went to school was a very good day. Unlike other children he couldn’t walk the 500 metres to get there. Jake remembers Mum and Dad taking the car and piggy backing him to his classroom. He never played outside at playtime and lunchtime because he didn’t have the energy. Jake recalls how he used to be allowed a special friend to stay in the class with him. On the good days he liked that.
At six Jake had another open heart surgery and things began to look up. He could walk to school, ride a bike and play outside with his friends. Good days for Jake and his family. By the time he was at Intermediate School he was due another surgery, was put on new heart medications and he felt well for a while. Sadly at Year 9 Jake’s heart function deteriorated and new medications made no difference to his quality of life. His only option was a heart transplant. He was 14 years old.
As he waited Jake took each day at a time. He enjoyed the good days and he let go of the bad. And then at 15 years of age he received a call that changed his world. A suitable heart had become available. “That was such a fantastic day and a nervous one too,” says Jake. In the early hours of the morning Karen and Jeff wheeled their son into theatre. Twelve hours later they were visiting him in the Intensive Care Unit and marveling at the pinkness of his lips.
Nine months on Jake is back at school and enjoying being with his mates. He’s just got his license and his own car. “I’m off on a new journey now,” says Jake. “There is still a lot of behind the scenes stuff that goes on, but it feels good to know Heart Children will be there along for the ride too; for me and my family.”
When you’re living with childhood heart disease the good days really matter. Here at Heart Children we’re passionate about providing life long support to heart children, like Jake and their families … through the good days and the bad. Will you help us? Make today a good day. Phone 0900 4 HEART for a $20 donation, or donate online now. To find out how else you can help heart children have more good days click here.