Meet the Cardiac Kids

Written by his Mother

Joshua was diagnosed with Pulmonary Atresia (a completely blocked pulmonary valve) during a fetal ECHO when I was 22 weeks pregnant, our care was transferred from our midwife to Mt. Sinai special pregnancy unit and from there we began weekly ultra sounds and a host of other tests. The prognosis was not good, and we were told to talk about whether or not we wanted to have an autopsy done, to make sure we had a camera on hand so that we could have a picture of him because it would probably be our only picture.

We had a number of false alarms where because of other complications they thought they would need to take him early, and with his condition he would not be viable. As it was, he was born via emergency C-section five weeks early on January 31 st 2008, he weighed 4lbs 11oz. He was taken immediately to Sick Kids via the tunnel and immediately taken to the Cardiac Critical Care unit. For two weeks Josh was unable to breathe without help, his saturation levels were too low to live without oxygen and his blood levels not good enough to have the balloon catheterization that he needed to survive. The first time I held him was when he was two weeks old, and still hooked up to so many machines that it was hard to find a place to touch him. His balloon dilation went well and by his third week of life he was moved up to the Cardiac ward 4D. From there we came to know our Cardiologist Dr. Russell who has followed us for the last four years. On February 17 th 2008 Joshua was released from Sick Kids weighing 4lbs 4oz.

When Josh was three months old were told he needed another balloon dilation, it was on a Thursday and on Friday he was released back into our care. That Saturday during lunch we began to notice some strange rhythmic movements in Josh's arm, then his lips and eye on the right side. We called the Cardiac floor and were told to take him to the ER immediately. At eight o'clock that night Josh had an MRI that determined a massive stroke in the back of his brain, and a number of minor strokes in the deeper areas of his brain. The cause was a blood clot that was shunted through the hole in his heart up to his brain, where normally it would have been pushed into his lungs. He was admitted to hospital where he had a number of tests but the end result was a large question mark. The stroke team was fantastic, checking in daily with us and with our cardiologist. They too follow Josh and over the years have been a major help in getting us the resources we need to help Josh reach his full potential.

Josh had his first open heart surgery when he was six months old, his second a month before he turned three years old and his latest just this past September 2011. He has suffered delays in speech, and development, he's had physio and occupational therapy and is now in a school that deals with helping kids with special needs. He is now a regular two-word user and other than fine motor skills he is doing very well developmentally. His teachers even say he's ready for a regular JK in the fall. There have been times when (at a different hospital) I felt that we weren't being heard and I phoned the stroke team nurse who spoke for over an hour on the phone with me, she then set up a meeting with their staff to help us get the answers we needed. They have always gone above and beyond for us and for Joshua. His cardiologist has made herself totally available to us for any questions and concerns that we have. His heart defect will always be an issue, Josh may have more surgeries ahead of him but we know in our heart of hearts that Josh is in the best hands possible at SickKids. We know that any issues resulting from the stroke will be handled with utmost care and concern. These people saved our Joshua's life and we are forever grateful for the care and support that we have received, for the way they keep on top of Josh's health problems so that we can enjoy getting to know him more and more. We are about to celebrate Josh's fourth birthday in just a week's time while I write this and if not for Sick Kids we would be mourning that day rather than celebrating his beautiful life. His heart is bigger, stronger and more courageous than mine. His smile lights the room and warms the hearts of all who know him.

My special thanks and love to both the Cardiac and stroke teams and to Sick Kids, words will never be enough to thank you for the gift you have and continue to give us; our son.