I've posted on this topic here and there on social media, but here's the full story for those who are interested. Warning: this is a long post.
An ASD is a hole between the right and left atria (upper heart chambers). It means that oxygenated blood flows back to the right atrium, where it's not supposed to be; a larger than normal amount of the mixed blood is directed from the heart to the lungs; and the right atrium and ventricle enlarge under the extra workload. Many cases are diagnosed earlier in life than Sophia's, but because the murmur had not been detected before and she had not displayed any symptoms (shortness of breath, low energy, cyanosis, limb swelling, etc.) it had gone unnoticed. Untreated ASDs, however, can lead to stroke, pulmonary hypertension, and other serious problems later in life, so it needed to be addressed.
After the diagnosis, her doctor referred her to a pediatric cardiologist in Saskatoon. And we waited for her appointment. For a year. When they talk about wait times in Saskatchewan...they are not kidding.
The surgeons looked at her heart again via another ECG and confirmed that yes, the hole was still there, and no, it wasn't going to close itself, and we were advised on what would come next. The good thing, they said, is that fixing a defect like Sophia's no longer requires open heart surgery. Not having known that procedure was a possibility, I had to retrieve my heart from the pit of my stomach and my jaw from the floor before we could continue. Then we learned that for the past decade or so the standard ASD repair protocol has been to insert a patch via cardiac catheterization, a 2-3 hour procedure requiring only one night in hospital. We were to expect her procedure to be scheduled in approximately 6-8 weeks.
I doubt it will be a surprise to anyone when I note that in the Land of Aging, Overstressed Hospitals we waited another 5 months.
So Sophia finally had her procedure on Friday March 13. It was scheduled for the morning, but was delayed until mid-afternoon. So after changing into striped hospital pajamas and consulting with one of the surgeons, we spent a lot of time in the waiting room. Which was probably good, all things considered, as by the time we were called Sophia had got over her initial fear and was running around pretending she was Cinderella and the hospital was her castle. She was even comfortable enough to be chatty and playful with the nurses as we walked to the Catheterization Lab.
We went into the lab together and Sophia was put under general anaesthetic. She didn't like the mask nor the gas, but she went to sleep fairly quickly (they said she wouldn't remember it, but she does, and still talks about it). Then Michael and I were ushered out.
Observing and measuring the defect is actually what takes up most of the procedure time; inserting the patch is fairly quick. They do a more detailed ECG via a camera that goes down the trachea, and measure the hole precisely with a balloon. They then take a slender catheter containing a transcatheter device up through a vein in the groin into the heart and insert the device so that it closes the hole.
The surgeons brought us back to the lab after they'd wheeled her into recovery and showed us video of the procedure. It was very strange to look at images of the inside of my daughter's body. They said her defect had measured at 14mm, but had been stretched by the balloon instrument to 18mm (some stretching during measurement is common). 18mm doesn't sound that big until you look at the size of your little girl and realize how small her heart is! And yet they described the size as "moderate".
When we got to the recovery room Sophia was just waking up and letting the nurses help her eat a popsicle--the first thing she'd had to eat for almost 24 hours. She'd been excited about it ever since she'd been told it would be there for her when she woke up. It's the little things that can make the difference, I guess.
She and I spent a rather sleepless night in the children's ward. The fold-out bed they gave me was so uncomfortable I was happy to crawl into the hospital bed when Sophia asked me to, and while I can't fault our roommates for the noise they made through the night it made rest difficult.
The next morning, after discovering the delights of Rice Krispies for breakfast, she had a chest x-ray (done, to my surprise, with a portable machine wheeled right into her room) and got to ride in the smallest wheelchair ever to the surgeon's examining room for another ECG. All was good so we were cleared to go.
Sophia ran out of the ward, played with her cousin all afternoon, and generally bounced back in a very short period of time. Leaving her parents very grateful for the miracles of modern medicine.
We went back to Saskatoon for her first post-op checkup this week. The device has not shifted and there is no residual leakage between the atria. The chambers of her heart that had enlarged due to the defect have already shrunk significantly, and will continue to do so until they are normal. By September her heart tissue should have grown completely over and around the device, making it virtually undetectable except by ECG.
She does seem a little changed. She has more energy (which the surgeons told we could expect), and it took a little while for her to adjust to that and figure out what to do with it other than throw more temper tantrums. Her appetite seems better, though that hasn't translated into any noticeable weight gain, and she seems to fall asleep easier at night as well.
Other than another check five months from now and every few years thereafter, there are no restrictions or contraindications going forward...it should be as if the defect was never there at all.
Finally, I would be remiss if I did not mention that despite our provincial system in general and Royal University Hospital specifically being completely overtaxed, we were overall very happy with Sophia's care. Delays notwithstanding, we were never made to feel rushed, and none of the stress the nurses and the staff must have been feeling due to the pressures of overcrowding was ever passed on to us. Everyone we interacted with was kind, and patient, and gave us their full attention despite the huge amount of work they had on their plates. So we are grateful not only for the procedure, but for the care and concern of the people who performed it.
When Sophia was three years old, her pediatrician detected a heart murmur during a routine checkup. He wasn't unduly concerned, but he did send her for an echocardiogram at the General Hospital. The images went to Saskatoon for evaluation, so we had to wait a little while for the results. The upshot was that Sophia was diagnosed with an Atrial Septal Defect (ASD).
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| Picture from Children's Hospital of Wisconsin |
An ASD is a hole between the right and left atria (upper heart chambers). It means that oxygenated blood flows back to the right atrium, where it's not supposed to be; a larger than normal amount of the mixed blood is directed from the heart to the lungs; and the right atrium and ventricle enlarge under the extra workload. Many cases are diagnosed earlier in life than Sophia's, but because the murmur had not been detected before and she had not displayed any symptoms (shortness of breath, low energy, cyanosis, limb swelling, etc.) it had gone unnoticed. Untreated ASDs, however, can lead to stroke, pulmonary hypertension, and other serious problems later in life, so it needed to be addressed.
After the diagnosis, her doctor referred her to a pediatric cardiologist in Saskatoon. And we waited for her appointment. For a year. When they talk about wait times in Saskatchewan...they are not kidding.
The surgeons looked at her heart again via another ECG and confirmed that yes, the hole was still there, and no, it wasn't going to close itself, and we were advised on what would come next. The good thing, they said, is that fixing a defect like Sophia's no longer requires open heart surgery. Not having known that procedure was a possibility, I had to retrieve my heart from the pit of my stomach and my jaw from the floor before we could continue. Then we learned that for the past decade or so the standard ASD repair protocol has been to insert a patch via cardiac catheterization, a 2-3 hour procedure requiring only one night in hospital. We were to expect her procedure to be scheduled in approximately 6-8 weeks.
I doubt it will be a surprise to anyone when I note that in the Land of Aging, Overstressed Hospitals we waited another 5 months.
So Sophia finally had her procedure on Friday March 13. It was scheduled for the morning, but was delayed until mid-afternoon. So after changing into striped hospital pajamas and consulting with one of the surgeons, we spent a lot of time in the waiting room. Which was probably good, all things considered, as by the time we were called Sophia had got over her initial fear and was running around pretending she was Cinderella and the hospital was her castle. She was even comfortable enough to be chatty and playful with the nurses as we walked to the Catheterization Lab.
We went into the lab together and Sophia was put under general anaesthetic. She didn't like the mask nor the gas, but she went to sleep fairly quickly (they said she wouldn't remember it, but she does, and still talks about it). Then Michael and I were ushered out.
Observing and measuring the defect is actually what takes up most of the procedure time; inserting the patch is fairly quick. They do a more detailed ECG via a camera that goes down the trachea, and measure the hole precisely with a balloon. They then take a slender catheter containing a transcatheter device up through a vein in the groin into the heart and insert the device so that it closes the hole.
 |
| ...And I took this one from Cincinnati Children's Hospital Medical Center |
The surgeons brought us back to the lab after they'd wheeled her into recovery and showed us video of the procedure. It was very strange to look at images of the inside of my daughter's body. They said her defect had measured at 14mm, but had been stretched by the balloon instrument to 18mm (some stretching during measurement is common). 18mm doesn't sound that big until you look at the size of your little girl and realize how small her heart is! And yet they described the size as "moderate".
When we got to the recovery room Sophia was just waking up and letting the nurses help her eat a popsicle--the first thing she'd had to eat for almost 24 hours. She'd been excited about it ever since she'd been told it would be there for her when she woke up. It's the little things that can make the difference, I guess.
She and I spent a rather sleepless night in the children's ward. The fold-out bed they gave me was so uncomfortable I was happy to crawl into the hospital bed when Sophia asked me to, and while I can't fault our roommates for the noise they made through the night it made rest difficult.
The next morning, after discovering the delights of Rice Krispies for breakfast, she had a chest x-ray (done, to my surprise, with a portable machine wheeled right into her room) and got to ride in the smallest wheelchair ever to the surgeon's examining room for another ECG. All was good so we were cleared to go.
Sophia ran out of the ward, played with her cousin all afternoon, and generally bounced back in a very short period of time. Leaving her parents very grateful for the miracles of modern medicine.
We went back to Saskatoon for her first post-op checkup this week. The device has not shifted and there is no residual leakage between the atria. The chambers of her heart that had enlarged due to the defect have already shrunk significantly, and will continue to do so until they are normal. By September her heart tissue should have grown completely over and around the device, making it virtually undetectable except by ECG.
She does seem a little changed. She has more energy (which the surgeons told we could expect), and it took a little while for her to adjust to that and figure out what to do with it other than throw more temper tantrums. Her appetite seems better, though that hasn't translated into any noticeable weight gain, and she seems to fall asleep easier at night as well.
Other than another check five months from now and every few years thereafter, there are no restrictions or contraindications going forward...it should be as if the defect was never there at all.
Finally, I would be remiss if I did not mention that despite our provincial system in general and Royal University Hospital specifically being completely overtaxed, we were overall very happy with Sophia's care. Delays notwithstanding, we were never made to feel rushed, and none of the stress the nurses and the staff must have been feeling due to the pressures of overcrowding was ever passed on to us. Everyone we interacted with was kind, and patient, and gave us their full attention despite the huge amount of work they had on their plates. So we are grateful not only for the procedure, but for the care and concern of the people who performed it.
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