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.