Friday, February 10, 2012

CHD Awareness: Intertwined Stories here in Harrisonburg - One Small Picture of the Whole

I remember one day,  a friend Kristin was telling me about her newborn nephews’ heart. He was born with all kinds of things wrong. She explained details about his surgery that went so far over my head. I recall thinking,”that doesn’t sound good, how can they help the poor child, no doctor could possibly do anything lasting.” I assumed it was so rare to be born with a serious heart deformity and that the doctors must have been on completely uncharted grounds. I imagined them hoping and puzzling their way through as they tried to keep him alive. I prayed for him and hoped God would spare him... but honestly, I was fearful that it was so beyond the talents and gifts God lent to us in this day and age...

It was March, 2006 when Jonathan, Kristin's nephew, was born. He was my introduction to the world of CHD.  Hindsight would construct a “pivotal moment" there but, at the time I remained clueless, never hearing or perhaps never registering the term "Congenital Heart Defect."

One uber-healthy child later, in November 2009 I would go to a 20 week ultrasound excited to find out if our next child was a boy or a girl. The words “something wrong with her heart, something is not right with the size and location of some of her vessels...” stand out from that days’ memory. Blindsided and whacked into another realm - there we were in CHD land.

As I stumbled around the Internet, hoping to scrap together some sense of my new reality, I found and connected with Mended Little Hearts of Winchester. They put me in touch with a member, Becca, who lived nearby, who’s son, Gabe, had the same diagnosis as my baby. He was 8 years old and doing well.

To be able to look another mother in the eye who knows the terms you now live and breath - I’m sure you can guess - it lit so many dark corners and grounded my feet a little. Hope started to be real.
Several hours for many days on the Internet taught me that CHD’s are not rare, unheard-of, problems that give doctors cause to shrug and shake their heads. I quickly learned that many, many babies start their life in need of complex surgery. Connecting with people such as Gabe's mom, in the CHD world became my goal. Online I met other expecting moms on a similar path and found that to be an essential form of support.

I contacted Jonathan's parents, the only other people I had ever heard of before that faced anything remotely similar. They helped me navigate. They answered my questions, and offered continual advice and support. All of the sudden their story “made sense” to me. Their story was now my Hope. How funny it is, looking back. From clueless to leaning on.

Gwenyth, my daughter, survived to birth. Her surgery went well. Reverence, a deep reverence is the best way I can describe the feeling when I would see her surgeon around the hospital (my favorite feature story about heart surgeons is here). We brought her home when she was one month old, everything had gone well. At two months old, out of the blue, she got sick and died suddenly. According to the doctors, they can only guess it was a virus. Her death is considered unrelated to her beautifully-repaired heart. She would need more surgeries as she grew - it was not going to be a simple road, but we were well on our way. And then we weren't.

"Medicine, I have had reason since to notice more than once, remains and imperfect art." - J. Didion

Almost one year after we lost Gwen, a friend, Heather approached me after our church service. She told me, that her nephew Thomas Campbell, down in North Carolina just got diagnosed with Hypoplastic Left Heart Syndrome (HLHS) in-utero. My first thought was “oh no! I wish you didn’t know me! I’m not representative of what has to happen.” I felt the word HOPE from my mouth would sound ridiculous. My other, first-thought was, "oh, no! Not another baby, and really, twice in this tiny-little church?" You want to believe if you take a hit, then everyone you know is “safe” - somehow you want to believe the least you can do is protect other people from this kind of nightmare. Superstition; you know it’s baseless yet it gives you something to pretend to steer with.

Thankfully I could offer something other than words touting hope, which again, coming from me felt less believable. I nominated her sister to receive a "Sister’s By Heart care package". This is a care package specifically for babies newly diagnosed with HLHS created by a recently formed organization called “Sisters By Heart.” Each item is placed with a friendly and informative note explaining why its included. A care package like this helps the mother become familiarized and perhaps even a tiny bit more comfortable with the reality of open-heart surgery on a newborn. It is a care package I wish I could have received. I also encouraged her to seek a local Mended Little Hearts (MLH) or some kind of CHD support-group knowing how important MLH of Winchester continues to be for me.

Several months down the line Heather and I learned unbeknownst to each other, of another local CHD Warrior and his family. I read about the family in the newspaper. It was a feature story about the March of Dimes up-coming walk. Heather on the other-hand, met the family through her husband, his building company having built their house. It was a family that recently moved to Harrisonburg from Tennessee. Christie and her husband was blessed with twins in 2007, Lauren and Blake. Blake is an HLHS "CHD Warrior" and has recovered from more than five surgeries. In May, 2010 Christie sadly lost a baby boy, Tristan to HLHS. He was born at 25 weeks. This week, at a special CHD gathering by my fellow church ladies, Christie was able to join us and share a little about her journey in CHD land.

Heather and I talked about how strange it is to go from never hearing about something to hearing about CHD so close to home and all in a short period of time. It is in once sense, helpful - feeling isolated is never a good thing. However, you also don’t want to believe it is so common.

In the last year I also learned about another sweet baby girl, diagnosed in-utero with HLHS. Her mother is commutes and hour here to work as doula here at the Brookhaven Birth center. She was on the Sisters By Heart recipient list, a care bag was being prepped to mail. Her little baby girl, Pheobe Leilani was born at 30 weeks, on April 11th, 2011. Phoebe was loved and snuggled by her parents for two and a half hours before she joined God's kingdom.


Looking back, down this one small path in my CHD journey, I see now, as the memories are recounted and the connections are mapped out - each personal story weaves together into a whole and it creates a fairly complete cross-section of CHD - a “sample” of what complex CHD looks like. I could create several tapestries like this, there are so many stories I know about and so many CHD warriors and family’s I’ve met.  CHDs are everywhere. I could recount stories nationwide. Gwen introduced me to countless little ones, some I follow closer than others because simply - it would be a full-time job to keep up with all of the CHD's kiddos that have touched my heart. This account just happens to be my more local, “home-town” story.

Of course a true cross-section of CHD would include stories about children who were born with a CHD that may not have needed surgery at the get-go. And that takes but a moment to fill in that statistic with personal, close-to-home stories.  Starting again, with my small church family, there a six year old girl, Jade  who was diagnosed with a hole in her heart as an infant. Her's was "wait and see" approach that turned out well in a surprising turn of events. Step out a little further and there is the story of the daughter of someone I know via a close mutual friend. Madison, nine years old, was born with a hole in her atrium. Last summer after the problem did not correct itself at they hoped, she under-went open-heart surgery. A close friend from childhood, her little boy has pulmonary stenosis, something that requires watching and may never post an issue, but is none-the-less, a CHD.

There you go, complete picture. CHD's from severe, to problematic, to minor, are indeed the number 1 birth defect in the country.

I compiled all these stories onto a dedicated Pintrest Board, if you'd like to spend a moment to read about each child in more detail.

So where does leave us, why am I paying homage to hindsight? Awareness. Simply put, it matters. It helps. It's useful - because if it's not you, it's someone close by - it's a little baby full of life, just needing some help with their heart, so they can stay here a little longer. It's their parents' hearts needing support from family, friends and strangers as they learn about strength and go to the end of "all it takes" to care for the little life, the tiny child, loaned to them. And the most important thing to me about awareness is that there are wonderful and simple ways to lend a hand of support to those living in CHD land. I can attest to the impact of at least two organizations. And please know even $5 is something. Please, consider supporting CHD causes during CHD Awareness week/Heart month and throughout the year. Thank you!

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