Life after Transplant

How Congenital Heart Disease has changed us

February is Heart Month and as such, I have been thinking a lot about how Congenital Heart Disease has affected our family.

Raising a child that has received a Heart Transplant is weird – no matter which circle you run in. To those who have healthy, “typical” children – you are scary. A burden. A helicopter parent. They see a sick child – a child who they do not fully understand and don’t quite know how to behave around.

To Heart Families – those with children living with Congenital Heart Disease – you are the lucky ones. Your child can run, play sports and participate actively as a normal child can. They see a child who has been fixed. They have quality of life. They have choices. They are the lucky ones.

It makes sense – no one really understands what anyone else is going through – whether that be physical limitations, financial difficulties, family problems, or the like. No one can (or should) walk in your shoes and fully appreciate the ways in which your life has changed.

So for heart month I thought I would compile a list of all the ways our lives changed when we entered the world of CHD.

Because of CHD:

  • We left our home behind for 5.5 months to live in Edmonton
  • We witnessed the death and resuscitation of our daughter
  • We have handed our daughter over to a team of surgeons (or cardiologists and anesthesia) 28 times for surgeries, medical procedures and cardiac catheterizations which required being put under general anesthesia
  • We have seen strength beyond measure
  • We have felt the love of family and friends like never before
  • We have gained friends who, although they are miles away – understand us in a way that our families can not
  • We have discussed how to let our families know that our daughter was gone and then watched as she proved that she was still fighting
  • We have had the PRIVILEDGE of calling our families to tell them the good news that a heart had been found for our daughter
  • We have seen our daughter overcome 127 minutes without a heart beat, brain bleed (s), heart failure, lung collapse, lung failure, acute kidney injury, 6 open heart surgeries, 2 thoracotomies, 6 cardiac catheterizations, 15 other surgical procedures requiring general anesthesia, 2 runs on ECMO, 2 different mechanical hearts, sepsis, chylothorax, developmental challenges, and so much more
  • We have seen what true determination looks like
  • We have cancelled SO MANY plans in order to keep Laura healthy
  • We have witnessed families saying goodbye to their babies
  • We have gained more knowledge about the human body than we ever expected to learn
  • We have found our new normal
  • We have gained the most amazing little person
  • We have seen God’s hands at work
  • We have witnessed miracles

CHD has changed our lives forever and there is no going back. Congenital Heart Disease affects 1 in 100 babies born in Canada. Many of these children will require surgery. Some will not make it to their first birthdays.

The world of CHD is not one that I wish for anyone to join, but if you do – know that there are those who understand and trust that you will receive many more blessings than moments of sorrow. God is good. If you hold fast to Him, there is nothing you can’t handle.

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