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Anne Elise’s Story

Anne was on earth April 28 thru June 28, 2005. She is our 3rd child--the 2nd to preceed us in death.  It's shattering to bury your children, but our comfort is in the Good News of the Resurrection of the body in Christ Jesus.  Anne was met in Heaven by her sister, Abigail, who died in 2003. Abigail's site is found under the "Resources" tab.

After Abigail died of SADS*, we left the hospital with empty aching arms. But we also had a burning hope--hope that if we got pregnant with her, then perhaps God would give us another. We embarked on a grieving journey that involved studying everything we could in diabetic pregnancy mgt, fertility & ovulation awareness, and everything there is to know about a PCOS high risk pregnancy.

Miraculously, we conceived again 9 months later on September 2nd 2004, and we took our care to the university teaching hospital where they specialize in high risk diabetes--how we wish we'd known of them when we were pregnant with Abigail.

Our pregnancy with Anne was uneventful & delightful. We declined any invasive prenatal testing because we didn't want to put the pregancy at risk. We were slated for countless high risk ultrasounds, so we figured we'd get the head's up if there was anything not progressing as it should.

Other than Anne running a little small, the ultrasounds never indicated a single problem. We even had an ECG that looked straight into her heart--it never revealed the heart murmur that would ultimately be to her demise.

Since Abigail suffered from SADS caused by late term cord constriction, we monitored Anne's late term growth vigilantly. We scheduled induction for April 28, 2005, but Anne ended up being born by c-section after experiencing some dangerous cardiac issues during early labor.

We discovered after her birth that she had a sizeable VSD (ventricle septal defect) caused by trisomy 18 (an extra 18th chromosome) .

Sadly, the university hospital policy was to retreat on any specialized cardiac care when trisomy was indicated. Anne wasn't even a candiate to see their cardiologist once her trisomy was confirmed. So the university sent us home with hospice, not expecting Anne to grow or thrive or live, and yet she proved week in & week out that she rather liked it here.

Medically, all we had to work with was our pediatrician. As much as we loved her, she was inexperienced in trisomy 18 and VSD--although she learned a lot about non-surgical VSD for us, and we'll always appreciate her for that. She put Anne on a simple cardiac medication called lasix, and it was working wonderfully to control her pulimary edema. I don't know why, but it never really sank in that we could have sought cardiac care elsewhere once we were released from the university--our city is small and has limited resources and I guess we just figured if the largest teaching hospital in our state wouldn't help us, then who would.

We came to learn, albeit too late, that nation-wide there are many pediatric cardiology specialists who would have worked with us in spite of Anne's trisomy. We firmly believe that a little better cardiac care and she just might have kept on going a good while longer.

But our heads were in a clueless fog always waiting for the other shoe to drop. The hospice "support" we had never considered the possibility that Anne just might live if given a little teeny bit of specialized cardiac care.

In fact to our dismay, hospice later decided to take Anne off the lasix, a decision made independently of our pediatrician--why we don't know. We've speculated, we asked, they hummed & hawed and avoided the issue--of course the dx trisomy 18 covers their butts without culpability.

We don't know what motivated them to make such a decision when a simple $4 bottle of medication was helping Anne thrive. We do know that they were rather like "gentle vultures" always seeming to want the "inevitable" to hurry up. Every time they came into our home their cousel was in hopelessness--never mind this sweet happy growing baby we had living with us.

For whatever reasons, hospice took Anne's lasix away and she died of congestive heart failure within 10 days of it's discontinuation.

Our pediatrician was shocked. She had even researched a plan for increasing her dosages to accomodate Anne's growth & weight gain. The first thing out of her mouth when we told her that hospice had taken away the medication was: WHY? That's the million dollar question that we'll never get an answer to.

Bottom line is that many medical and hospice agencies brush such a patient off as dead before they really are--death is their job; indifference their motto.

Politically, Anne was deemed a non-candidate for any cardiac care thanks to her trisomy dx. In spite of their trisomy politics, she thrived and grew until her VSD couldn't maintain her life any longer. She died at home in her mother's arms June 28, 2005 at 11:03pm. She & Abigail wait for us in the butterfly meadows of Heaven. We'll see you soon, Sweeties!

*SADS=sudden antenatal death syndrome

Latest Journal Update

Happy Birthday, Pookie

Another birthday season is upon us, my sweet girl. It's been so long since I held you, and yet it is as yesterday in so many ways. Today was a hard day; so lonely & forlorn. Gramma stopped by to bring a gift for you--a used little angel nitelight that she found in a thrift shoppe. I sank into a deep depression after she made several desparaging remarks about patients at the hospital where she works. I couldn't help but think how she could have just as easily been speaking of me since my situation of ill-health & disability is so much the same as the patients she found repugnant--except they were in-patients and in need of even greater compassion. We who struggle to cope with disability, disease & chronic pain, are in need of a kind and caring hand, and yet our world casts us to the curb. How badly would you have been treated by "care-givers" had you lived? How many believed that you were better off dead! Not for your sake, but for theirs. Sigh! I just ended the day feeling very sorry for those patients who needed such caring. I felt bad for them as I do for myself in that we're looked upon as fakes or liars--as if we don't actually deserve the care they we need. What will become of me when I too need full-time nursing care? Then when the part of the conversation came around where I started to weep, she grabbed her purse and ran for the door. I had tried so hard to steer our topics of conversation away from anything tear-provoking, but it wasn't so easy at times & I couldn't help but weep. Nevertheless, I patted my eyes an apologized for being so low in hopes of keeping her company a while longer. But I couldn't hold her, and she got up and ran. She gave excuses for having to go feed her dog, but I knew she just didn't want to deal with my tears. And I could tell that she worried that if we talked any further then more tears were naturally bound to spill over--and how could they not when the topic of conversation was so discouraging? I just couldn't help but wonder how it all would have been so much differnet had you been here. It was just a weary, heartbreaking day, and the whole thing made me feel worthless, unworthy, and so very alone.