February is more than valentine's, roses and chocolates...

Today is February 1.  February is Congenital Heart Defect (CHD)  Awareness month.  Before Jake I had no idea what a CHD was, other than knowing of one baby on my husband's side of the family who had been born with a CHD but lived in the US and I occasionally read updates on his parent's blog (Porter is doing great, and is now a big brother to little Joe!).

But on a morning in early December 2012 the world as I knew it shattered.  Lying on the examination table for my 21 week ultrasound, as one technician turned into two technicians, which turned into two technicians and a doctor, then two technicians and two doctors...none of whom offered a word of explanation as I lay on the bed knowing something was terribly wrong and tears streamed down  my face.  I'll never forget the look on Jon's face as he strained to make sense of the technical terms being tossed around, and the images that he could see on the screen.  After an eternity we were finally told that our baby was a boy - but that there was something wrong with his heart.  The term Hypoplastic Left Heart Syndrome was given to us, and we were told to come back in two days to see Janeway cardiology, Maternal Fetal Assessment and Janeway Genetics.  Jake's diagnosis of HLHS turned into Double Inlet Left Ventricle and Hypoplastic Right Heart Syndrome a couple of months after that day when we made our first trip to SickKids to see the fetal echo cardiologist.  At 32 weeks of pregnancy during my weekly echo we discovered that Jake had also developed Complete Heart Block, a condition that often results in a fatality if developed in the womb.  At 36 weeks pregnant we heartbrokenly left our 4 year old daughter behind with her grandparents and stepped on a plane to Toronto to wait for Jacob's birth.

Flash forward to today, when I just laid my sweet, smiling, almost 10 month old boy into his crib for the night.  Today I know what a CHD is.  I know this monster inside out, because it constantly threatens to steal my baby boy from me.  Here are a few of the things I now know about this horrible monster:

1. Congenital Heart Disease is the most common birth defect, affecting 1 in 100 babies.  That amounts to a baby  being born with a CHD every 15 minutes.

2.  Congenital Heart Disease is the leading case of infant death related to a birth defect.

3.  Of the types of Congenital Heart Defects, single ventricle defects are among the most complex and challenging forms of defects to treat.

4.  Congenital Heart Defects are more prevalent than all types of childhood cancer combined.  Research suggests that it is up to 60% more prevalent than childhood cancer.


Those are a few quick facts that sum up hours that I have spent in research and reading since Jake's diagnosis.  But here are the real facts.  The living, breathing, breath takingly beautiful facts:

Jacob Rene James Anstey  is so much more than a broken heart.  Moments after his birth, before I got to hold him in my arms or kiss his sweet face and after receiving two iv's to administer lifesaving medication, Jacob's father took this picture.

Four days later Jacob was dedicated back to God by his grandfather.  We listened to the words and prayed with all our hearts for healing, knowing that the following day Jacob would have his first open heart surgery.  Georgia met her brother for the first time and held him in her arms and told him that she loved him.  

At five days old, Jon and I held Jacob through the early hours of the morning until the time came for us to walk him to the OR.  I felt like I had ripped my own heart from my chest and laid it on the operating table, and I would gladly have done that if it meant that Jake's heart would be whole.

I truly believe that God guided the hands of the surgeon that day.  At six days old Jake was rushed back into the operating room for another life saving open heart surgery.  Once again God saw him through it.

Flash forward to today, when I just laid my sweet, smiling almost ten month old boy in his crib for the night.  3 open heart surgeries, one cardiac catheterization, two pacemakers, 9 months with a feeding tube, countless meds and twice daily injections later.  Our home is filled with love and hope.  But there is also fear.  Fear that this monster known as CHD will hurt our boy more than it already has.  There is no cure for Jake's broken heart.  But 20 years ago Jake's heart was a death sentence.  Today there is hope thanks to research and breakthroughs in the medical field.  In another 20 years there may be a cure.  I believe.  When I hold Jake and feel his strong half a heart beating through his chest - I believe.  I will make every month CHD awareness month for my son.  

Look at him now.  Jacob Rene James Anstey is God's child, and he is defying the odds every single day.