- Posted January 22, 2014 by
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This iReport is part of an assignment:
Living with a rare disease?
Living a full life with half a heart
Read more about Avery's journey here and here.
- dsashin, CNN iReport producer
My daughter, Avery Grace Weisdorfer, was diagnosed with hypoplastic left heart syndrome prenatally. Having three healthy children already, this was a blow unlike anything I’d ever experienced. All of the sudden, we were faced with the fact that our unborn baby might die.
A normal heart has four working chambers, but with HLHS the left side of the heart is either missing or severely underdeveloped and unable to function. There is no cure for HLHS; rather a series of surgeries performed within a child's first few years to temporarily reroute the plumbing of the heart in order to survive.
One option this diagnosis left us with was termination, but my husband and I quickly decided we owed our unborn daughter a chance at life and over the next four months waiting for her to be born, I researched heart anatomy and read dozens of personal stories of other children with HLHS. Some were living life, some struggled daily, while others had passed.
I remember when my daughter Paige, who was 6-years-old at the time Avery was born, said to me, "Are you sure we can't just take her home? Because she looks just fine." And Avery did look fine. She was perfect in every way other than her body would slowly begin to suffocate her within days after being born.
During Avery’s first three years, the oxygen saturation in her blood was typically in the 70’s rather than 100% like a normal heart. This is barely enough oxygen to sustain organ function, let alone enough for a child to grow and thrive. Not surprisingly, it’s very hard for kids like Avery to walk a great distance or have endurance to play like other kids. Outwardly, many HLHS children often have blue lips, hands, and feet due to the low oxygen in the blood.
Today Avery APPEARS to be a healthy 4 year old and unless you see the scars on her chest and torso, she blends right in with others in her preschool class (unless they run a race!). Sometimes this is actually a challenge and I use it to educate people about congenital heart defects. Just because a child LOOKS ok doesn’t mean they are. I often hear comments like “She looks great, she must be better!” Her body is drastically different than ours and with every beat of her heart, she’s beating the odds.
HLHS is all Avery has ever known. For HER, living with HLHS is completely normal. For ME, it has changed my life in many ways. Kids with severe heart problems tend to get sicker than other kids and even a simple cold can become life threatening. As a result, my family has become germ-a-phobes and I have a pediatrician and cardiologist on speed dial.
Every four-year-old girl I’ve ever known wants to be mom someday and when I hear things like “when I grow up,” it’s different than it was before I had a child with a life-threatening medical condition. To hear her talk about it often times breaks my heart because I'm not sure IF she'll grow up and if she does, I don't know if it's possible for her to have a baby. Some say it is, some say it's not ... time will tell and each case may be different. I try not to spend much time worrying about that but it is a reality that we live with.
I live one day at a time and I’m thankful for every day. I’m thankful for all the little things because these are all days I never knew we’d have with her. In many ways, HLHS has changed me for the better.
My daughters are 13, 12, 8, and Avery is 4. Avery’s older sisters have been like live-in therapists and I’m convinced that’s one of the reasons she has done so well in her journey with HLHS. They take every opportunity they can to educate people on congenital heart defects and they have such knowledge and compassion for all kids with disabilities. No doubt Avery has changed their lives as she has changed mine. I am curious to see what they will do with their lives, their future career paths. I am so very proud of them already!
Twenty years ago, most of these babies died days or weeks after birth. Today, many with HLHS survive and grow and lead normal lives despite a circulation that is, what I call, a medical miracle.
Avery’s most recent surgery was six months ago and it has provided her with more oxygen in her blood, thus giving her more energy than before. Her sisters can even tickle her without giving her a rest break! Like all HLHS kids, Avery will never be “done” with surgeries, her heart will never be “fixed”, and she will likely need a transplant someday. Until then, she is living a full life with just half a heart and inspires everyone she meets!