Kathryn

Y2K had much hype surrounding the potential technological bugs that people around the world were stocking up on supplies and buying generators in the event something bad was going to happen. My wife Maggie and I were however more focused on the birth of our third child and what an amazing year to be born in. Named after her Great Grandmother, Kathryn or more commonly know as Kate or Katie was a full term baby with no indication of any problems prior to or on her June birthday. Truly blessed as parents because of Kate her two older siblings Kelly, Marshall and last but far from least Rebecca-Rae. 

 

It was not until the May of 2002 that Kate became very ill. She was vomiting even when there was nothing left to vomit and running dangerously high fevers that wouldnt respond to regular or even double doses of your typical fever reducers. After already being seen and discharged from the Grey Nuns hospital It was not long before we took Kate to the Stollery Children's Hospital. There she was admitted and was soon undergoing various common tests as her condition worsened. When the results came back the Dr diagnosed her with the very rare Kawasakis disease.  

 

Kawasaki disease can cause inflammation of blood vessels in the arteries, especially the coronary arteries and this inflammation can lead to aneurysms. Terrified and shocked young parents of three we could not believe our ears. Without delay Kate underwent an echocardiogram and ultrasound tests to see if her heart was experiencing these further symptoms associated with the diagnoses. The Drs soon met with us and wasted no time in telling us that there was swelling around her heart then proceeded to ask us if we had ever been told of any irregularities with Kates heart to which we answered no whats the matter with our baby girl? The Dr then proceeded to tell us that in addition to the swelling they found a large hole in her heart approximately the size of the end of his thumb. 

 

We couldnt believe what we were hearing, how can this be? We later tried to rationalize why this wasnt caught earlier after all she never missed a check-up with her pediatrician who would listen to her heart at every visit. He proceeded to tell us that likely because the hole in her heart was so large that it did not make the typical sounds associated holes in the heart. The many Drs who had listened to her heart upon being admitted now knowing the results of the latest tests listened again but this time taking a more engaged listen to the heart sounds being made by this 16 pound 23 month old girl. With an increased awareness all that listened before could now heard the sounds of blood bypassing back from the left to right Atrium. I struggle to this day why that same level of attentive listening had escaped every single medical professional up to that point. I can not help but wonder what unseen effects this had on her during the critical first couple years of her life.

 

The diagnoses for Kate was an Arterial sepital defect and a Patent ductus arteriosus defect. Both are considered simple Congenital Heart Defects at least from a medical point of view. From a parents point of view I can tell you that this was the scariest time of our lives. At the impressionable age of 2 1/2 I cant imagine what thoughts were running through Kates head as we did our very best to remain strong in her presence despite the frequent Doctor visits leading up to her surgery. After a course of intravenous gamma globulin Kate started showing signs of improvement and our first of many week long stays at the hospital came to an end. 

 

It was not long and we were back at the Stollery for frequent follow up tests. We were referred to a two cardiologists to discuss the two possible corrective measures for these defects. The first being open heart surgery and the second was the new procedure of installing a Helex Sepital Occluder by way of cardiac catheterization. This new procedure had only been completed twice before on pediatric patents with the youngest being more then twice as old as Kate. 

 

When we met with Dr. Coe to discuss the new treatment there was some specific challenges because of the location of the hole. These challenges left Kate with the strong possibility of repeat procedures or all together complete failure of the procedure. This together with no long or mid term evidence of it's success left us with a choice we didnt want to face.  Unfortunately we would soon discover we would not have the time to wait and nobody knew for sure what effects the ASD had already had on Kate. In a crude (male) sort of way going with the device was like buying a first year model of a new vehicle. Typically  problems are found and recalls for fixes are needed. We felt that Kate deserved better odds then going with an unproven device and as such we made the toughest decision of our lives to date and to go with the open heart surgery.  Before this could happen however Kate would need some time to gain some strength and weight back before they would even consider the surgery.

 

On a now routine visit to the peds cardiac unit in December 2002 the ECG had revealed signs of increased swelling on the right side of Kate's heart.  Dr Dick was quick to come in to the room to consult with us and proceeded to ask us "so what are your plans for Christmas"?  Christmas was only a couple weeks away and our only Christmas wish was for Kate to be healthy and to hopefully put this really bad dream behind us. A few days later the date of December 24th was confirmed for her open heart surgery. The next toughest thing I've ever done in my life was to enter the operating room and the surgical team putting my angel to sleep in my arms in preparation for the surgery. I don't wish this experience on anyone but at the same time given the situation I wouldn't allowed myself to have been anywhere else. I remember finally breaking down just outside the O.R. and asking the nurse who escorted me out to take care of my girl in a sternest way as I could put together. Christmas eve between 7:30am and 11:45am pediatric surgeon Dr Rebeyka corrected the ASD & PDA. You often hear how quickly kids rebound from surgeries and illness because of there strength and resilience. In true form Kate was home a week post operation and getting stronger by the day. The hospital staff did an amazing job over this period to try to ensure Kate had some positive experiences during this time. Maggie and I will never forget that Dr. Rebeyka came in on Christmas day with his family to follow up with us and give Kate a stuffed animal.

 

Christmas has extra special meaning for us and we pause and remember as a family what we all went through with Kate every Christmas. I wish I could say that was the one and only extended hospital visit but Kate has been back to the Stollery for other non- heart related issues and countless illnesses that have kept her from school. At almost 11 years old we believe that Kate is gaining some momentum and is showing amazing strength despite some of her ongoing challenges. Kate loves being with her family and friends and enjoys outdoor activities, fashion design, reading, pets care and has recently learned to downhill ski and is going into her second year as a fastball pitcher. Thank you CHS for the opportunity to share a small portion of Kates story. 

 

Chad & Maggie

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Email: childrensheart@shaw.ca

 

Phone: 780-454-7665

Unit 128 9920 63 Ave

Edmonton Alberta

T6E 0G9

Please note our PO Box address is no longer active 

Children's Heart Society Last Updated: May 2017