Kacey’s Story

When I was pregnant, our doctors told us we were at high risk of having a baby with Down Syndrome. At our first ultrasound, they weren’t able to get a clear picture of her heart, so they sent us to the Royal University Hospital in Saskatoon for a fetal assessment. Again, they were unable to get a good picture, so we were sent for a fetal heart assessment.

It was at this time that it was suggested that we get an amniocentesis to learn for sure whether our baby would have Down Syndrome. We were also given the timeline for when we could abort – we told them that this was not an option for us. We went back when I was 20 weeks pregnant for another fetal assessment where she was diagnosed with Atrioventricular Septal Defect (AVSD). After a very long ultrasound, we were taken to a private room. A doctor came in and sat down with us.

“Your baby has a hole in her heart.”

Those were the scariest words we had ever heard. I had so many questions… Did I cause this? What did I do? Will she die in my belly? How can I save her? The questions were endless. We had never heard of CHD and we had never heard of an AVSD. We didn’t know anyone who had had heart surgery. He tried to help us understand that our baby would survive but would need a major Open Heart surgery. He told us that this was a routine surgery as far as heart surgeries go.

A week before my induction, we started our stay at the Ronald MacDonald house in Saskatoon. There were so many people in the room for her birth, wearing gloves and masks. It was scary, but I knew that it was for our sweet baby’s safety. Dad cut the cord and we were able to hold her. We named her Kasey and she was perfect. They performed all the necessary checks and then we were able to hold her again before she was whisked away to the NICU for more tests. When we saw her in the NICU, she had tubes and IVs all over her, but she was stable, she was “okay.”

The nights in the maternity ward were the hardest. I was sharing a room with other moms and I could hear their babies. I could hear them comforting their babies and yet mine was on a totally different floor. Was she crying? Did she feel alone? Was she scared? I would go downstairs to sit beside her for a few hours in the middle of the night. It was confirmed that she had Down Syndrome at 14 days old but we knew right away when she was born.

We spent her first 5 months in 3 different hospitals, on 7 different wards. She spent 14 days in the NICU, then was transferred to the Pediatric Ward where I was finally able to spend the whole night with her. She was there for 4 days when we were discharged. We were home for week but had to rush her back to the ER in Prince Albert because her breathing was shallow and she had a slight cough. We stayed there for 10 days then we were transferred to the PICU at RUH.

She was intubated for a month with pneumonia. It was so scary. During this time our family lived at the Royal University Hospital. Kasey overcame the illness but she was placed in reverse isolation in the Pediatric ward due to heart failure. We tried to get her to gain weight for her heart surgery while we waited.

The morning of her surgery we flew to Edmonton. She had heart surgery 2 days before she turned four months old. We spent a month in recovery back and forth between the PCICU and the cardiac ward due to some complications. On her 5-month birthday, we flew back to RUH in Saskatoon and were finally discharged 4 days later. We have been home on heart medication and Pulmonary hypertension meds ever since.

She has many appointments with cardiology, dieticians, therapies, respiratory, hearing and eye specialists. She was placed on home oxygen after a sleep study showed that her oxygen drops at night. She had been fed by an NG tube since day one and now has a G tube in her belly for her liquids. She can eat and is starting to love it. We are learning sign language. She is the boss and she lets us know when she is done with something or someone! Kasey is amazing. We are so blessed to have her and all my children. She has taught us so much about ourselves this past year. She taught us how tough she is and to keep going.

If a small, fragile newborn can go through all of that – we can get through anything.

Without our family and friends, I don’t know how we could have got through this year. Kasey has shown as all we can be and more. She is our everything and we are so lucky to have her in our lives.

  • Jessica Rabittskin (mom)

Amanda’s Story

I was born with Tetralogy of Fallot. When I was five months old, my parents traveled to Edmonton where I received open heart surgery. During the surgery, when repairing my VSD, my Bundle of His was nicked with a suture. I went into third degree heart block. I then received a pacemaker in my abdomen and eventually my heart repaired itself (which is not uncommon according to my cardiologist)to the point where I only have a second degree heart block when I exercise.

Now I am sixteen and since the first surgery, I have not needed another open heart surgery. However, I have had a surgery to change the pacemaker and I will need another one again in a couple years where I’ll get an trans-venous pacemaker put into my shoulder.

Although living with a heart condition can sometimes be difficult, it is manageable. Thanks to CHAMPS camp, I was able to meet other kids with CHD’s and they empowered me to become more confident in myself and the way my heart condition affects me. For the most part, I am able to keep up with others in my gym class aside from intense workouts or a lot of sprinting. Outside of school, I dance about twice a week and am able to do everything any of the other dancers do.

Sometimes living with my heart condition can be just as emotionally trying as it is physically. In the past, I have struggled with body image in terms of my scars. I used to try to wear clothes that completely hid them, but I now I know that they’re a part of me and my story. I have grown to love them because I see them as part of my identity. They are a positive reminder of strength and resilience. Also, I find myself having illogical fears that somehow my health has gotten worse, but knowing that I have such amazing doctors and nurses like Dr. Kakedakar and Dr. Pharis, always helps ease my mind.

As well as being in dance, I am an avid reader. Recently I found a book at my local library called Nowhere Near You by Leah Thomas. It has a main character with a pacemaker. Although it’s not super realistic as it is science fiction, it is still nice to read a book with a protagonist who just happens to have a heart condition. I highly recommend it to anyone who reads YA and has a pacemaker or knows someone with a pacemaker.

Overall I am living successfully with my heart condition and I honestly cannot imagine my life without one. It has become a part of my identity and I am proud to know I have persevered through a lot and came out stronger for it.

Claira’s Story

My pregnancy had been perfect with no problems at all. I lost weight rather than gaining, and I worked right up until my water broke at work – 2 days before my due date.

We gave birth to our beautiful baby girl on  May 19th, 2016. She was everything we could have hoped for and more. Claira was jaundiced so we were in and out of the hospital recieving bili light treatment. I think we had been home for about 2 full days all together when we headed to her 1 week checkup.

We thought that besides the jaundice everything was fine; we had a perfect little girl. Little did we know that day was going to be longer than we expected. Our family doctor had noticed a very odd/loud murmur and sent us right away to see a specialist pediatrician,  Dr. Johkan at the Yorkton hospital. After what felt like the longest wait of our lives, we had gotten in to see him and after having  listened to Claira’s heart for about 5 seconds he rushed my daughter and myself by plane to Saskatoon, with my husband following by car at 2 am.

We spent 2 weeks at RUH where she struggled to gain weight. Shewent from 7lbs to just under 6lbs while I struggled to keep my milk supply up. With the stress of it all I just couldn’t give her what she needed so we would top off with formula. Claira was put on a high calorie diet, in the hopes that she would gain weight. Then, after many tests, one doctor who said there was something wrong with her heart, and another who said they thought she had brain damage (based on the fact that her eyes were too far apart) we finally got some news. After a lot of testing, we got the all clear that there was nothing wrong with her brain! Great news!

We were also told she had a VSD but they were 80% confident the hole would close on its own.

By the time we were able to leave, she had finally gotten back to her birth weight, and we were told to stay on the high calorie diet, to keep in contact with a dietitian, and to have weekly weigh ins. After a couple months of very very slow weight gain our 3 month appointment came. At 3 months old we were told the hole was not getting any smaller, her kidney was starting to drop, and too much blood was flowing to one side of her heart – all of which explained her struggle to gain weight.

This is when we were put on the wait list for surgery. We got the call October 7th and then October 14th was Clairas surgery at the Stollery – it was the most difficult time in our lives.

Passing our newborn baby off to the nurse for surgery knowing what would happen next was the single most difficult thing I have ever had to do.

I broke down crying, but I was confident that she was in excellent hands. The staff and doctors at the Stollery went above and beyond for us and were so understanding and helpful. After a very long wait (I honestly cannot remember how long we waited) that felt like days, the surgeon met with us and told us that it was a successful surgery but that he had found another 2 holes in her heart during surgery. Thankfully he was able to seal them all, adding a patch to the problem hole and a few stitches to the others.

Our surgeon was Dr. Alaklabi; he was so nice and understanding and really took pride in his work. He put up with my crazy questions that I’m sure I repeated more then once and explained the process before and after everything. After 2 weeks in Edmonton we were finally able to go home as a new family.

Since then she has been growing like a weed and meeting all her milestones as if there was never a problem. At our last appointment with Dr. Pharis we were told the patch looked wonderful. The only problem is that she has developed a muscle bundle right beside the patch which has caused a slight murmur, but shouldn’t cause any issues. We will continue to follow up with Dr. Pharris to keep us all at ease.

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Claira is 2 years old now and excited to meet her new brother or sister in October. Nothing holds this girl back. I still worry every day but I am so happy that moment in our life is gone and over. Thank you for reading. All you heart mommas and daddies are rockstars. I know it may be really hard to go through right now but there is a light and you will get through this.

Owen’s Story

Owen was born sept 25,2012 with an unbalanced AVSD in Saskatoon. We had found out at our 20 week ultrasound that Owens heart was small and that there was a hole in it, requiring Owen to be born at RUH with access to the NICU. At 2 days of age Owen was transferred by air ambulance to the Stollery in Edmonton where his heart team was deciding if Owens left side of his heart was big enough to be a two ventricle heart or if he was going to have a one ventricle heart requiring the Norwood procedure.

Owen had his first open heart surgery when he was 11 days old to repair his AVSD and to create 2 valves – the mitral and tricuspid valves. The team decided that his left ventricle was big enough to function as a two ventricle heart. After a few months in the NICU in both Edmonton and Saskatoon, Owen was able to come home but couldn’t eat on his own so he had to be fed through a feeding tube in his nose.

Feeding was a struggle; Owen wouldn’t breastfeed or take a bottle. He was fed through the NG tube until his next surgery.

Owen had his 2nd open heart surgery in August of 2013 when he was 11 months old to repair the two valves that they had created, as they were leaking. Owen recovered well from this surgery but we knew repairing the valves was only a short term solution.

Owen had his 3rd open heart surgery just shy of his 3rd birthday in August of 2015. Dr. Rebekya replaced his mitral valve with a mechanical one. Owen is now on Warfarin to prevent any blood clots from forming on the valve. As a result of where the electrical system is in the heart, when the mechanical valve was placed it cut off the electrical system telling his heart when to beat, placing him in complete heart block. Owen had surgery for a permanent pacemaker a week later. This was a long hospital stay for Owen and he wasn’t really well when we left the hospital. He wouldn’t eat, started losing weight and was throwing up. After numerous echo’s postoperatively, Owens heart team in Saskatoon (Dr. Kakadakar, Dr. Pharis, and Dr. Pockett) found that there was a large VSD that was created accidentally at the time the mechanical valve was placed.

Owen went for his 4th open heart surgery 2 months later in October 2015 when he was 3 years old to fix the VSD that was created during the previous surgery. The hole was the size of the Dr. Rebekya’s thumb nail. Owen recovered really well after this surgery and was surgery free for 2 years (the goal was supposed to be no more surgeries until he was a teenager to replace the mechanical valve with a bigger one).

During the Summer of 2017 at one of Owen’s echo appointments Dr. Kakadakar saw that there was a build up of scar tissue under his aortic valve causing him to have higher pressures in his heart. If this was left untreated the narrowing would cut off the blood supply going to his heart and body.

Owen had his 5th open heart surgery in December of 2017 when he was 5 years old. Dr. Rebekya removed a large amount of scar tissue and also some heart muscle to make this area bigger to prevent any further narrowing in the future. Owen was only in the hospital for 4 days after this surgery as everything went well and he was recovering nicely.

Owens next anticipated surgeries will be a day surgery in 5 years to replace his pacemaker battery, and another open heart when he’s a teenager to replace the mechanical valve with a larger one. If the narrowing does return under his aortic valve he will need open heart surgery sooner to place a mechanical aortic valve to make the area bigger.

We currently travel to Saskatoon for Owens echo’s and pacemaker checks every 4-6months. We also make a trip to Edmonton once a year to meet with KIDCLOT who manage Owens warfarin. We have a point of care machine at home where we monitor his INR every 1-2 weeks and self adjust his warfarin.

IMG_6947.JPGToday Owen is thriving, he is 5 years old. He is in nursery school, Ukrainian dance, Gymnastics and baseball. He enjoys swimming, biking, climbing and tormenting his brother and sister. When you look at him you’d never know what he has been through.

Thank you to our heart team in Saskatoon – Dr.Kakadakar, Dr. Pharis, Dr. Pockett, Dr. Robinson, Marie, Angela, and Bob!