My precious girl… I love her so much. She is beautiful inside and out, and her beautiful heart makes me smile. Her beautiful, amazing heart also worries me… over the past few months we have noticed a few little things about our girl’s heart…
She loves to run, and dance, and play, but lately she has complained that these things are making her heart beat too hard. And it is beating hard, we can see her chest moving significantly with each heart beat. Several times recently she has said that her heart was beating too hard when she was being still, reading a book or coloring, and these things made me glad that her annual heart checkup was coming soon. I was glad that her cardiologist would see her, and we would know exactly what to worry about.
We saw Dr. M on Wednesday for little M’s annual visit, and he and his team spent hours very thoroughly looking over little M’s heart from every angle… little M is so great at the doctor, and after he had talked with her a little bit, she asked him when she was getting the jelly on her chest (for the sonogram) because that is her favorite. Then she laid still for an hour while they did it, and she thanked them afterward… precious girl.
When little M had her surgery to repair her heart after she first came home, her pulmonary valve was blocked, and to repair it, it had to be left leaky. The hope was that the valve would grow with her, and when she was older they would be able to stretch it a bit via a non-invasive catheterization.
Unfortunately, that is not the case… her pulmonary valve has become more leaky (this is very typical for kids with TOF). There are other issues at work also, little M’s heart is double outlet right ventricle. The major arteries leaving her heart are both on the right side, making the right heart work harder. This may not have normally been a problem, but her leaky valve, along with her double outlet, is making her heart work about 40% harder than a normal heart would. It’s working harder when she’s at rest, and it is working double overtime when she’s at play.
Little M will have an MRI done in the next couple of months to see what her heart is doing, it’s size, and how hard exactly it is working. At some point a catheterization may be done to check her heart pressure from a more accurate reading.
But there is no doubt that little M will need a new valve…
The hope is that this valve, and her little heart, can hold out until she is ten years old. The hope is that at the age of ten she will be big enough to receive a larger valve, maybe even an adult sized valve.
If she declines significantly, they will of course move forward with the valve replacement sooner, but obviously the hope would be for less open heart surgeries for our girl.
Of course we knew that this was a possibility. But little M had been doing so well, that we had all hoped there might not be any more major surgeries for our girl.
We are so very thankful that there is a fix, and that she has this option, and we are grateful to have such a wonderful doctor, who loves and cares for our girl so greatly. As Dr. M said this week, “to know her is to love her.” He couldn’t be more right, she is the most amazing little girl I know!