Hi, my name is Jean and I am the proud parent of three amazing children.
In 1999 while I was in labour an ultrasound was done to see the position of my baby. During this ultrasound the technician was silent and did not say a word. After having two other children I knew something was wrong. When I got home the phone rang and my doctor told me to go to the hospital immediately since the baby did not have any heart valves. I remember this statement and how I just stood frozen with fear. After getting to our local hospital I was taken via ambulance to Women’s College Hospital where I was met by many different doctors. The labour was long and difficult and once my daughter was born she was immediately whisked away for testing. That day the transport team from Sick Kids Hospital came and transported her. When I was leaving I remember one of the doctors saying, “We are very sorry about your baby”, this is when I knew things were very bad. Once at Sick Kids we were told that she had Hypoplastic Left Heart Syndrome and we became official parents in the CHD community. We were given the three standard options, a heart transplant, a staged reconstruction of the heart with three open heart surgeries or to do nothing (compassionate care).
I so wish that the defect had been detected during pregnancy so that I could research and understand what would lie ahead of us. Knowledge helps when you are faced with life threatening illnesses. We have completed the series of surgeries and the journey has been long. My knowledge now includes, ng tubes, daily injections of enoxaparin, hematomas, 16 different meds each day, code blues, home oxygen, heart failure, RSV, pneumonia and many, many trips to the hospital. It is amazing what we can do when we are faced with these difficult situations.
Over the past fourteen years I have become an advocate for all kids and families affected by CHD and I try to help new parents. We do not receive services or help when our child is born and we all need to change this. The CHD journey is very scary but I know first hand that you can get through it. If our kids are willing to wage the battle so can you – they are worth every second and every tear that you will shed. Congenital Heart Defects are one in 100 births but my daughter is one in a million!
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