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.
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 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.
Today 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!
We were in shock and sick with fear.
Chloe was born on December 17, 2008 at 7 lbs 1 oz. She had a heart murmur but they said it is common in infants and often closes up overnight (which happened with our first child). The next day, the murmur was still there. They got an echo done of her heart. The technician wanted a second opinion. Luckily, the pediatric cardiologist, Dr. Tyrell, was in the hospital for a heart clinic that day (they are only in Regina a few times a month).
Dr Tyrell had a look and told us that Chloe had Truncus Arteriosus, which is the same CHD that my husband’s older brother was born with.
We were shocked – my brother in law has Truncus Arteriosus but he has 6 children, all with healthy hearts.
And strangely enough, Dr Tyrell had been his doctor. Basically Chloe’s pulmonary artery and aorta were connected where they met the heart in one big valve (like a tree trunk with branches coming off of it). She would need surgery fairly soon.
As we waited for surgery, we worried whenever she cried as her oxygen levels would dip. Finally, at 6 weeks old we took Chloe to Edmonton to the Stollery Children’s Hospital for her first open heart surgery.
Dr Rebecca performed the surgery and everything went well. We stayed there for about 10 days and then were transferred to the hospital in Regina for a couple of days before going home with strict guidelines to wean her off of a couple of diuretics and morphine. She would need to continue to take aspirin daily to prevent her body from clotting in her new conduit/valve.
When Chloe was about 2 years old, she had a cardiac catheterization to buy some more time until her next surgery. They had said at her first surgery that the conduit they put in wouldn’t grow with her and that as she grew it would narrow, requiring another surgery. They had estimated we would have 5-10 years. However, Chloe was growing fast – in the 98th percentile and very active. They did the cardiac cath to widen the conduit a little.
When she was almost 4 years old, she started to tire very easily and her lips would turn bluish if she was running around lots or working hard. We were sent off to Edmonton again for her second open heart surgery. This time we were able to stay in the Ronald McDonald House and what a blessing that was. We went up a few days before surgery for an MRI and pre-op tests. And we spent the days before surgery visiting every park close by that we could because Chloe knew she would not be able to do the monkey bars for 6 weeks after her surgery.
She recovered very quickly from the surgery and very shortly after surgery she was wanting “real food” -not just sips of water and an occasional popsicle. We were able to go home after just 7 days! She is one determined and tough young lady.
Since her last surgery, Chloe has been doing exceptionally well. If you didn’t know, most of the time you wouldn’t be able to tell she has a heart defect.She is now 9 years old and very active. She loves the monkey bars, trampoline, bike rides, gymnastics and art.
In the fall of 2017, she started to get recurring fevers for no apparent reason. She didn’t feel sick and would be fine all day and then get a fever for a few hours in the evening. This happened for awhile and couldn’t see anything wrong. One night we took her to the ER and they ran tests but didn’t see anything concerning and told us it was probably a virus. But it wasn’t going away. I took her to the pediatrician, who examined her and talked to the cardiologist in Saskatoon. They suspected she had endocarditis (an infection in her heart), but the blood cultures had not shown anything. We immediately drove up to Saskatoon.
In Saskatoon, they did another echo, a transesophogial echo, and blood cultures every 8 hours for 24 hours. Finally, one of the blood cultures came back positive and they knew exactly what bacteria they were dealing with. There was a higher gradient (higher pressure) in her conduit, so they were guessing that was where the infection had “set up camp”.
They put a PICC line in Chloe’s arm and we started IV antibiotics. We stayed in Saskatoon for about a week, and then went home on IV antibiotics for 5 more weeks. I had to learn how to use the IV pump and give her her medications. She had two different antibiotics and we had to give her an IV 7 times a day. The hardest part for Chloe seemed to be missing gymnastics.
Now the infection seems to have cleared and she is back to doing gymnastics. She is one of the strongest people I know.
While our journey has not been easy, it has taught us greater patience, strength and faith. It has made Chloe the kind, strong and compassionate girl she is. It has taught us to cherish the little things and celebrate our family.