A Patient’s Perspective

Carter’s Story – from the view of his parents

So, he’s OK now then?  This is a question I received whenever I tell the story of my son’s journey thus far as a ‘heart kiddo’ (child with congenital heart disease).  This is such a relative question.  OK meaning is he going to live?  OK meaning is he going to be held to a normal kid’s status?  OK meaning is his tender half heart going to allow him to do the things in life that any child deserves to experience?  Although I often cringe at the ignorance in these words, I am lying if I say I haven’t wondered this myself.  Our son is 10 now.  His whole life we have been told that he has an unforeseen future.  So I do ask, is he OK… for now?

Most kids with heart disease will encounter a series of surgeries and lengthy hospital stays as a baby or a young child.  Yet this doesn’t mean they are exempt from any future surgeries and hospital stays.  In fact, for most this is just the beginning of their experience of a life of medical care.

As brand new parents, in addition to being parents of a baby diagnosed in utero as having a serious complex heart disease, the medical jargon was very foreign to us and there were so many questions we didn’t even know how to ask.  Even though we learned quickly how to communicate with doctors and what we needed that was necessary to care for our child, we still cannot even begin to pretend that we are qualified to care for him without great help from a doctor’s care.  And not any doctor, but a qualified pediatric cardiologist.  One that knows about our son’s diagnoses and one that we feel comfortable with asking any question to.  The dear doctors we have worked with have endless patience and will listen to even the dumbest question- because all questions are important when you are caring for a child.

I deeply feel we could not have done even half as an adequate job caring for our son without the great help from his pediatric cardiologist and the great team behind him.  He has had such an unknown future from the beginning and although his condition is not new, there are always new findings through studies and new medical technology.  All of this amazing work allows for better care and a better future for our son as well as all of the children dealing with cardiac illnesses.

After our son had gone through many surgeries and many, many hospitalizations, for family circumstances I needed to go back to work.  We had received such great care from the hospital staff and I felt so much love for us at the hospital, I knew that working there with heart kids was the only place that I wanted be when I had to spend my time away from my own heart kiddo.  I have a great love and respect for the hospital and doctors- and having had worked with them for 5 years, I realized they truly are as amazing as I had thought.  There is SO much time, SO much devotion, SO much love for these children with special hearts.  I have seen on a first-hand basis those parents that are willing to follow the doctor’s advice and keep follow up appointments compared to those families that do not.  Parents and cardiologists are a team.  It is important as a parent to be trained and feel comfortable enough to be able to care for a heart child at home.  Parents know their child and are their 24/7 with their child.  With the parent’s experience and the doctor’s knowledge and tools we can work together to give our heart children success.

Now that our son is 10, he is considered a survivor.  His still has an unforeseen future but it is looking brighter.  We are so hopeful for his future and know that it is so crucial to his success in life to be able to be involved with great cardiologists that know him and know how to best help him.  As he gets older, we will eventually need to transition to adult cardiologists.  We know that it will come faster than we expect it to.  Especially looking back at our son’s past 10 years, amazed that we are where we are and he is doing so well.   It seems scary to think we will need to leave his pediatric care behind when we are so comfortable with the way they do things.  However, we know that he will not be able to get the best care unless we can keep moving with great cardiologists fit for him at each unique time in his life.

As a parent, our number one goal is to protect our children.  Looking back 10 years ago I see a very innocent and naive set of parents leaning heavily on their doctors to not only protect their child but to save his life.  We have continued to lean on them as our knowledge has increased and our son has grown.  I can honestly say that the doctors involved in our son’s care not only saved his life but gave us hope.