Last week my family received some very big, not very good, news about the littlest and newest member of our family. My niece Violet was diagnosed with several Congenital Heart defects. She had an emergency catheter procedure on her heart and will have to endure a few more open heart surgeries (one this week) to make things right. We are hopeful and positive and the outlook is good, but it will be one day at a time until she’s there. I crave information in things like this so that I can get my head to stop spinning and wrap my brain around this set of complications. The bare bones of what she has include:
- Her aorta and pulmonary artery are flipped – in opposite positions from where they are found in a normal heart. (Official: TGA = Transposition of the Great Arteries)
- She doesn’t have a mitral valve connecting the upper and lower left hand chambers.(Mitral Atresia or Congenital Absence of Mitral Valve)
- She also doesn’t have a wall between the right and left ventricle (lower chambers) – she basically just has one big lower chamber. (VSD = ventricular septal defect)
I needed a picture to help see this. Here’s a normal heart and an image of a heart with 2 of the things Violet is dealing with – TGA & VSD. She doesn’t have PS, but do you see in the second picture where that PS is, that space between the LA / LV is the mitral valve and in Violet, there is no space.
Unfortunately there doesn’t seem to be one good foundation / organization to look to for information; every case is so unique to that individual (complicated by age and any other health factors). I’m not quite sure how I found the Hjartekatten blog, but I was so taken with the idea of these cats and critters given to children who have to have heart surgery in Sweden. That idea stuck with me and I made Violet her own little “HeartCat”. We were able to visit her this weekend and she was looking good – especially if you look past the feeding tube and a few extra (necessary, but noisy) monitors, she was awake for a good part of our visit and we were able to hold her and get in lots of snuggles.
She’s got a long road ahead of her, and we are all rooting for her. I love knitting for babies and kids and this just motivates me to do more toys and accessories for Violet & my own kids, as well as the charity knitting projects – PatPats Hats, Hjartekatten, are certainly near and dear to me. It’s absolutely no fun when kids are sick.
::BIG HUGS:: for you and your family, and ::little gentle hug:: for Violet. Reading this make me tear up, as I understand how terrible tit is o see a little being to go through something like this. Please tell your fam that I am thinking of them and will send good thoughts their way whenever i remember!
So sorry to hear about your niece. I hope every thing turns out ok. She will love her cat!
There’s nothing like finding out a baby you love has a complex congenital heart defect. My son has tricuspid atresia (he lacks the tricuspid valve and also the right ventricle). He’s been through a balloon atrial septostomy and 3 open-heart surgeries. And we had to get past a perinatologist who told us to terminate my pregnancy. It’s been a hard road, but he’s 8 now, and he plays baseball and gets As in school. Thank you for sharing your story, and know that Violet is not alone.
Thank you so much for sharing! I am so glad your son is doing ok!