Did you just google Fontan?
Is it in the middle of the night? Sitting in a cold computer room at the hospital? Holding tight to your IPAD sitting at the bedside of your newborn? Trying to see the words in front of you through your tears?
If this is the first thing you have stumbled upon in your search for information in your shell shocked state of mind do me a favor. Stop!
If you have already happened upon web page upon web page of doom and gloom, horrible statistics, scary medical jargon....enough.
Googleland can be a very scary place at this point in your journey, so tread lightly.
I remember googling this crazy set of complex heart defects Jillian has, sitting at a computer late at night and being scared to death.
I remember googling Norwood, Glen, Fontan and wanting to throw up. I may have a time or two....or three.
Because the only sites I came across eight years ago were filled with horrible statistics, life altering scenarios, heart breaking stories. And terminology that my non-medical mind could not comprehend.
And it scared me to death.
I walked around in a fog for weeks once I found out Jillian was going to have to have the three staged surgery and life with a "normal" heart was long gone. I would stop nurses with the look of a crazy person and ask them time and time again...."will she be able to run, talk, learn?" "Will I get to take her home....ever?" "What does the future look like?" "Tell me, tell me, tell me!!"
And they would smile at me with those kind eyes and tell me "every story is different, every heart child is different..."
If you have been diagnosed in utero with HLHS/HRHS/or some other complex CHD that doctors are telling you will require many surgeries, that your childs heart can't be fixed, that maybe you should terminate.....get a second opinion, a third if you need to. Talk to experts.
If your child is diagnosed after birth, like Jillian, and you have a doctor telling you that they can't fix their heart but they can re-plumb it to give your baby a shot at life....believe them.
If you have any doctors who are not cardiothoracic surgeons or CHD experts (say for instance a NICU doctor who knows about premies but doesn't necessarily know much about CHD) try and tell you to use comfort care and not make your baby a part of your life tell them to kiss your ass (I wish I had).
But most importantly DON"T sit there on the computer reading all the bad, scary things about the Fontan. If you must get information google CHD awareness and connect with other families who have already traveled this road and get support.
I am here to tell you that there are hundreds of kids - and more and more adults - who have had the Fontan and are living very happy and active lives.
That is not to say that your journey won't be scary. That it won't be without roadbumps, sometimes some very big roadbumps and big doses of heart break.
But there is hope. Lots of hope. And some very talented surgeons and an array of doctors whose focus is to give these kids a shot at life.
And as some very wise nurses continually told me....every heart child and their path and their story is different.
So back away from the computer and make your own story.
I hope it's a good one.