Matthew Blackwell

Matthew’s story as retold by his Mum.

When Matthew was born he found it difficult to breathe.

He spent that first night in the neo natal intensive care unit so medical staff could keep an eye on him.  But by morning his limbs had taken on a disturbing bluish tinge.  They transferred him to Auckland Hospital for tests and by 8pm that night we learned the awful truth.

Matthew was diagnosed with a congenital heart defect.  On a line from minor to major his heart condition was a long way towards major.  Underneath his small chest Matthew’s heart was a mess.  It was like a jigsaw puzzle that hadn’t been put together properly and with some of the vital pieces missing.

As mother to three older children, I’d kissed many a tear away and kissed many a scraped knee better, but how could I fix this?

At five days old Matthew had open heart surgery, a Norwood/Rastelli procedure that at the time had been performed only a few times in the world.  For eight hours the surgeon worked her magic on a heart the size of a walnut and donor tissue was carefully crafted to Matthew’s heart.  We are forever grateful to the family, who, despite their own tragic loss gave our little boy a chance at life.

Three weeks later I took Matthew home and began to learn how to be a parent to a very sick child.

There have been many ups and downs, so many times it has all felt just too hard; and many, many precious moments that make it all worthwhile.  And through it all there’s been @Heart.  They’ve been an incredible support to us in so many ways and I know they will continue to be a vital part of our lives as we move along our heart journey.

Matthew is now three years old.  He has had his second open heart surgery and is recovering really well.  We feel so blessed.  For Matthew the future will hold more procedures and open heart surgery and I know there will be many challenges ahead for Matthew and for us as a family.  And lots of adventures too.

@Heart is the only not for profit organisation with a mandate to facilitate the best possible care for children affected by a heart condition and their families in New Zealand.  With no government assistance they exist because of the generous support of caring people in communities around New Zealand, people from all walks of life, people like you.

As you take on the Lake Taupo Cycle Challenge I hope heart children can count on your support.  Click here to set up your fundraising page and take it from me, your help will greatly improve the lives of children and families coping with the daily issues of childhood heart disease.

Liz
Matthew’s Mum