Backstory



(and her Aunt and Uncle)
the short story of this blog that became a horrible record of three huge losses in five months time

Gwenyth Graham Carpenter is our second baby girl, our second daughter.

She was born on March 17th, St. Patrick's Day, at the Children's Hospital of Philadelphia. We lost her on May 14th, 2010. Gwenyth was just shy of two months old.

She left so unexpectedly while being "prepped" at Rockingham Memorial Hospital for a helicopter ride to University of Virginia Children's hospital. She had some symptoms that concerned us and subsequently her pediatrician, who requested the transfer after consulting with docs. at UVA.

Gwenyth was born with a congenital heart defect (CHD) called Truncus Arterious type I complicated by a severely dysfunctional valve (the one that would normally be used as the aortic valve). Induction was necessary at 37 weeks (if she made it that far) to attempt to save her life.

"You would never dream, from looking at her that anything at all could be wrong with her."

Dr. Spray, one of the worlds top pediatric heart-surgeons, repaired her heart two days after birth. He surprised us when he described the surgery to be, "as big as it gets." Besides a conduit placement for the pulmonary artery, it involved a double homograph (two human donor valves, one for the aorta and one for the pulmonary artery). 

She recovered beautifully even as the doctors questioned if she would make it to birth. We knew she would need surgery several times as she grew - it wasn't an easy path, but she was well on her way as a little CHD warrior.

Our little Gwenyth was discharged from CHOP April 5th. We stayed in Philly a for a week or so. We moved back home to Virginia in time for her one month birthday.
 
All her doctor visits and echo's showed a heart beautifully, expertly repaired and functioning top-notch, minus a few small, expected issues that were just something to watch, but causing no problems.

Based on the little bits of info the doctors have to go on, it appears to be a virus that took her life.  No huge symptoms gave us any foreknowledge and it was too late by the time we took her to the doctor.

We were packing for UVA - we thought she was just about to get on the helicopter and we wanted to be there to meet her on the ground - it was an hours drive, we wanted to get there.
Instead we had to sit a red light while desperately trying to get to her -the hospital was just down the road - we could see it. They had called to say her heart stopped. And we were not there.

When we got there they had already been working for about 10-15 minutes. The sight of my baby girl, cold and lifeless with her "soft spot" moving up and down as they tried to get life back in her body - it is a source of eternal anguish every time I recall those moments and all that followed. 

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Later that evening we would be host to more devastation as we learned the news no one wanted to tell us.  Two hours after she died, far away in another place, Marie Graham Carpenter, her dear Aunt, just 19 years old, also passed away. Our sweet, spirited, dearly-loved, wonderful, irreplaceable-in-every-way, Marie, it seems, slipped of a steep ledge in a beautiful woods. It was a place where she liked to go to clear her mind.
She was there with a friend, in-part, to grieve the loss of little Gwen, lost before she had a chance to meet her. I'm so not okay with this on any level, I can barely write about it... I spend time working to remember her laughter but mostly fight down the knowledge that in my nightmare of what happened to  my child, I also lost her...
In October our hearts broke again and severely, with the sudden loss of Gwen's dear Uncle Winship - also loved deeply - the "middle brother"- the caring but, quiet, more reserved but "still waters run deep" -kinda guy. He lit up when he played with his dog. He loved his nieces. He adored his girlfriend. He had such a big grin. He took his life after a long struggle with bi-polar disorder.

My husband, with one of his sister's, tried to get to him during a time of particular distress caused by his God-awful disease mixed with God-awful grief in the loss of his sister. They were too late. It is unbearable - the whole of it - every part of the "story" that is our reality. 

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Our intertwined grief is exposed here -which was never the plan for this blog.
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Lillian Lane is my wonderful and amazing other little girl, born so healthy and strong, Dec. 14th 2007. The joy of having Lil does ground me in this grief - if only because I have a responsibility of her to raise her believing in Hope regardless of the way I feel while my soul aches and struggles for breath.

I praise God for both of my children. They teach me about the depth of love with glimpses of the nature of Eternity (something I wish I wasn't forced to reckon with, but there isn't a choice now).

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Post Script:
A few more details about Gwen's diagnosis besides Truncus.

Autoimmune neutropenia (AIN)
She also had an auto-immune blood disorder that was discovered and thankfully, easily treated. To the best of my knowledge it was Autoimmune neutropenia (AIN). To be honest, I'm still learning about this, as it was diagnosed and treated and became small-potatoes at the time. As I like to try to understand everything medical related to my loved-ones, I will be spending time trying to make sure I fully understand AIN
 
One question, for example, is was her's "allo-immune" as described below, does it even matter which "kind" it was, and what are the implication should we consider a third child?
"In neutropenia discovered at birth or shortly after birth, a diagnosis of allo-immune neutropenia (from maternal white blood cell antibodies passively transferred to the infant) is more likely."
 
Persistant Left Superior Vena Cava (PLSVC)
Gwen also had this. It is a benign condition, a rare, but of no consequence, "alternate" anatomical structure of the heart, according to her doctors (we first learned this at when UVA diagnosed her with Truncus Arteriosus at 20 week pregnant). It is however, more common in people with congenital heart defects. The doctors left me with the impression it was not necessarily a defect, however, reading about it certainly leaves me with the impression that it is a defect even if it causes no harm. Wiki on PLSVC.

Hypoigmented macule - Potentially "tuberous sclerosis complex (TSC)"
I know a nurse at CHOP mentioned it while giving her a bath or something. She said, something like "oh, she has a Hypopigmented macule here on her back." My memory is SO vauge - I'm sure I asked her to explain. I think she described it as an "ash leaf mark" and I really don't recall anymore. But I kept it in my mind. I asked my pediatrician, she noted it, at least, I have a vague memory of this. I can only guess that both times no one raised anything of alarm - I suppose they all just said it was something to watch.

Whether it was actually an "ash leaf mark" or not, as I understand, it could not be known anyway, until time went on to reveal more of them or other symptoms. I asked if her autopsy mentioned it and was told no and that they would have noted it was there. So, did she have such a mark on her back (I know, why didn't I really LOOK with my own eyes and pay attention -I suppose everyone made it sound so unimportant and well, I really did have other, far more pressing issues to fill my brain).

So what is it? What would it mean? I barley understand it, but it probably was in fact, nothing:
"hypopigmented macules may be a normal finding in newborn babies. One suggestion is that 3 or more white macules at birth should alert the clinician regarding the possibility of tuberous sclerosis." Read more,  here.

Probably nothing. Shouldn't have even written about it here...but a mothers' mind - it works this way. I'm still her advocate. So these things matter even if I can't to anything with them... but wonder.