On October 1, 2009, we first heard the words "your baby has a severe congenital heart defect." Like so many parents, the news was received at our structural ultrasound, when I was 17 weeks pregnant. The experience was traumatic, to say the least, not the least of which was because, save for our incredible cardiologist (who by the grace of God happened to be in the office that day, doing prenatal consultations), the response from the medical team was largely negative, with most surprised that we were not choosing to terminate. Although they were compassionate, the overall feeling that we were given was that our child was in grave danger and would likely not make it to term - and, if the baby did, would not have a good prognosis. It often felt as though we were fighting our medical team to stay positive. The frustrating thing to me is that I now know that there is a great deal of HOPE with these kids, and none of that hope was conveyed to me by the medical team (again, save for the cardiologist).
October 1, 2011
These pictures were taken at Lake Tahoe, where we took a 10 day vacation this past summer. Yes, Tahoe. As in 7,000ft+ Lake Tahoe. He did amazingly well.
I also wanted to update you on the other special kids I included in last year’s letter. One, sweet Travis, has passed on after complications from surgery – but not before making his mark as an exuberant, sweet 16 month old. We will forever remember him and our lives are the better for having known him. The others? They’re all still here – every single one of them thriving…
Addison, almost 3 (post-Glenn)
Townsend, almost 3 (post-Fontan)
Grace, 3 years (post-Glenn)
Aly Jean, 27 months (post- Fontan)
Jake, 18 months (post-Glenn)
Olivia, 18 months (post-Glenn)
Zoe, 17 months (post-Hemi-Fontan)
You know, the further I get into this journey with my son, the more moments I have with him, moments I’d have missed if I’d chosen to terminate, and it makes me more and more sad that so little hope was given to me at the time of diagnosis. I was so I incredibly lucky that Nancy Kim happened to be in the office the day of my diagnosis, because she was the ONLY one who gave me any hope. It makes me so sad to think of parents walking out of your office without that same opportunity. It’s not that I blame you for discussing termination right off the bat – based on your knowledge of HLHS, I can certainly understand why you assumed I would choose that option. But it wouldn’t have been fair, because my decision would have been made based on only half the story. You personally know about the complications these kids can face and the tough outcome that many do face, but what you don’t know about is the extraordinary number of these kids who fight past the complications to live happy, normal lives. Yes, it’s scary (believe me, the fact that my son still has at least one more open-heart surgery looming on the horizon has kept me up many a night), but on the other side are kids who play sports, and go to college and get married – and have normal lives. That side of HLHS is kind of a big part too, don’t you think? A part newly diagnosed parents also have the right to know about before making any decisions. Knowledge is power, right?
In the past year, along with 8 other heart moms, I started a nonprofit, Sisters by Heart, to reach out to newly diagnosed HLHS families, to combat some of this one-sided advice new parents were getting. Many, many newly diagnosed families had similar experiences with their perinatalogists, where termination was discussed and all of the attendant complications of an HLHS diagnosis, without any real discussion of the very real chance that their child could make it through all of the complications and lead a VERY normal life. We don’t downplay the complications (it is a very serious diagnosis and does take the lives of way too many sweet children), but we do try to provide hope as well as the reality that a lot of kids are thriving despite the diagnosis. We reach out to these families, and provide care packages with hospital necessities, as well as bios and pictures of our kids, most of whom are doing quite well. Just to give the parents another point of view. We have already given out care packages to over 100 families all across the United States. You’ll be interested to know that, since we track on the families we send packages to, we know that the vast majority of these 100 children are thriving despite this diagnosis.
Word is getting out about what we do. Our brochures are now in major cardiothorasic centers across the country. We’re starting, one family at a time, to change the landscape of how HLHS is perceived. Our hope is that, someday, every single family given a diagnosis of HLHS will be told not just about the gravity of the situation, but will also be given one of our brochures (of which I am enclosing a few), and told that there IS hope. My son, and so many others, are living proof of that. So Dr. Rotmensch, please, when you have another new family facing this diagnosis, yes, tell them how serious it is. Tell them how risky it is. Tell them that the first year will be beyond horrific. But then, hand them our brochure, and tell them there is HOPE. There is another side. These parents need to know that, for their sakes and for their unborn HLHS warrior’s sakes. Please help us to spread that hope.
Thank you and until next year (maybe!),