Kristopher, 2007

Kristopher, age 2 years and 3 months

Kristopher, age 16 months

Hello...My name is Theresa and I am the very proud mom of Emma and Kristopher. We reside in Niagara Falls, Canada.

My son Kristopher was born with severe aortic stenosis with bicuspid valve. Under the wonderful care of midwives I went through the normal ups and abnormal downs of pregnancy. At my first ultrasound it was noted that there were choroid plexus cysts on my unborn child's brain.. either part of normal development (benign) or something much greater and potentially life threatening. During an in-depth 2D ultrasound at around 26 weeks and at a larger hospital it was shown that the cysts had dissolved.. phew!!!

So...about one week ahead of Kristopher's due date I went into labour... fell down twice on my way to hospital (slippery ice!). My labour was wonderful and uneventful...6 hours in total. All digits accounted for...Apgar score of 9..and getting ready to go home and be followed up with our midwife. Not a chance! Upon the strict (God-sent) advice of the nurse on duty, who insisted that I have a very loud murmur followed up on, Dr. McMain an elderly and very much respected and intelligent pediatrician was on call and ordered an echo. Being a nurse myself and with my mommy instinct, I knew this was going to be greater than the innocent variety.

The results came the next morning...and so did my tears and greatest fears. He explained that Kristopher had a congenital heart defect called severe aortic stenosis and needed to be transported immediately to the Hospital for Sick Kids in Toronto... an hour and a half away from our home. If he had been sent home, he would have gone into congestive heart failure in about 10 days...according to our pediatrician. Prostaglandin-E was administered via IV to keep his ductus arteriosus open to allow for blood circulation to his vital organs, as the main feed to the rest of his body was nearly sealed shut at the aortic valve. Instead of three leaflets or a tricuspid valve.. he was born with a bicuspid valve and it was very tight.. life threateningly. The pressure gradient across his valve was somewhere near 115 mm/Hg (mercury) and it should be "0".

My mother and sister were of tremendous support to us at the hospital while awaiting the helicopter to arrive from Toronto...and I am blessed to have had their support! Kristopher ended up being taken via ambulance back to Sick Kids and was admitted to the CICU (cardiac intensive care unit)... mom and dad followed about 2 hours later. We were met with tubes.. monitors and a slew of medical personnel.. all too much to deal with really.. plus mom fresh from giving birth, hormones out of whack and truly fearful that Kristopher was not coming home with us.

On day 3 it was decided that a heart catheterization or balloon dilation was the best form of palliation for his condition...as it is not curable. It was successful as it could have been. A common side effect, a blood clot, was detected by Doppler in his left foot and meant nearly 6 months of subcutaneous injections of a low molecular heparin called enoxaparin, at home. I gave this twice a day while balancing Kristopher—breast feeding and then me crying after having caused him pain from the injection. He was bruised at the end of the course but the clot dissolved and it was all a small price to pay. Initially it was thought that at one month another dilation would be needed.. nope...then they said by a year...nope...

Kristopher is at present 2 years and 3 months old and is holding at a pressure gradient of around 33mm/Hg and has mild aortic regurgitation from the catheterization. This is all positive. Our cardiologist Dr. Stephenson told us from the start, "the longer he can wait, the better." I guess he is a good listener! Kristopher is an active, robust, 36 pound 37 inch 2 year old!!!!!! Emma and Kristopher are the best of friends and are truly blessings to my husband Rob and myself.

July 12, 2006

Due to complaints of chest pains along with an ST depression rhythm change on a 24 hour holter monitor…Kristopher is scheduled for his second valvuloplasty at Toronto Sick Kids. They are questioning if a coronary artery might be blocked, since his pressure gradient across the valve has not increased from his current status of moderate aortic stenosis. They seen confused at this point as to what might be going on.

July 21, 2006

Kristopher had his second valvuloplasty (balloon dilation) on the 20th. His aortic gradient went down to 18 to the mid 20's (normal is 0 and his was in the low 100's when he was born!), which for his defect is fantastic! They did not cause any further regurgitation or insufficiency in his valve, which is a common sacrifice of the procedure (his is already mild). The angiogram they also performed showed a hockey stick shaped artery but they are not concerned with it, and feel that having opened the valve might cause the ST rhythm change on the ECG (angina) to go away...they will reassess this with his next sedated echo on August 3rd.

We are relieved and so thrilled with his results. It was very difficult to predict what the doctors were going to find as symptoms are not common with the degree of stenosis he had going into the procedure. The outcome was most positive...and no blood clot this time!!!! YEAH !! Hopefully this will hold him off for some time and he can enjoy a few years (or much-much-much-longer??) without intervention.

The doctor who did his procedure, Dr. Lee Benson, gave him an A+

September 2007 Update

Kristopher has been doing great!  We got a one year pass from SickKids a couple months back, and hope that actually happens!  He is still at a mild to moderate level of stenosis (a far cry from being critical at birth)and the regurgitation from his AV valve is minimal. Kristopher and my daughter Emma participated in a lemonade stand this past August.. we called it "Pucker Up for Lil' Hearts!"... to raise money for CHD kids and to raise awareness...it was a $1100 success and a lot of fun!

Kristopher is full of energy.. rarely needing a break.  He will sometimes tell us his heart is "beeping!", and when you feel it... wow is it ever!  I think he has learned to compensate as most kids do. He seems very tuned into his body and we are thankful for that and for his ability to express it to us.  We hope to continue with only positive updates on Kristopher.