a few answers about Winnie

I’m sure many of you, like us, wonder what the heck happened.  Winnie was doing so well, making progress, seemed to have some long-term treatable conditions, and then died suddenly.  We don’t have all the answers, but we have some.  We’ve come to terms with that (on some level), as even having every single answer would not bring her back.  It would not make us feel better.

Winnie died from a critical coarctation of the aorta.  This is an important part of the heart that allows blood to pump through.  Winnie’s was critically small, unable to allow proper pumping of blood.  All newborns are born with an opening (ductus) within their hearts that close within a few days of birth.  Some babies have a delay in this hole closing.  Winnie’s heart was depending on that opening for blood flow within her heart, because of the coarctation of the aorta. It was a heart condition that was ductal dependent.  When the hole (ductus) in her heart closed at 9 days old, her heart was unable to pump well.  This happened during the night, but even if it happened during the day it was all very sudden.  They tried many emergency measures, but it was too late.

The condition that she died from is treatable if detected.  It requires an open heart surgery.  Winnie’s heart was scanned (an ECHO) and examined, and the coarctation was undetected.  Even looking back (after death) they cannot find it.  From our understanding, coarctations are sometimes missed on scans.

We are still waiting to find out if anyone can make connections between Clive and Winnie. We have so many caring physicians, but it seems there is no connection to be made. The geneticist and several other doctors cannot find a connection.  They were both heart conditions, both crashed suddenly while they were doing well.  Clive ended up having an emergency surgery and then on life support, Winnie did not.  Their heart conditions were very different.  They did not share a genetic condition.

Winnie did have an extremely rare genetic variation.  Like, 18 known in the world rare.  We only know of it because of the very complex genetic testing that is now available to test all her genes.  Because this testing became available in only the last few years, there is a chance we’ll learn more about this variation in years to come.  What we do know (from a world-wide study of the 18 girls, done just 6 months ago) is that it is only found in girls, has a wide range of symptoms (including hip displasia and brain structural abnormalities, but also including many symptoms that Winnie did not have), and is not known to be fatal.  The girls and women in this study did not have dramatically shortened life spans, if at all.  We are not carriers of this condition (or any genetic conditions), it was only found in Winnie’s DNA.

If and when we have more biological children, it will be quite a while from now. This is to allow my body to recover and replenish to provide the best nutrients for another baby, after 3 pregnancies in 3 years.  It’s also to allow time for our hearts to heal, grieve, and a restored hope to grow.

We may never know more.  We probably won’t.  We will have to come to acceptance and understanding that our life’s path is simply very, very hard.  Unfathomably difficult, and without apparent reason.  We have been in such a state of shock because we never believed this could happen again. Even during our days in the NICU with her, we didn’t think at all that her story would be so much like her brother’s.  It was meant to be a new song this time.  Instead, it feels like a nightmare on repeat.  A recurring chorus that we don’t want to be singing.  Compounding loss, rather than a restorative story.

Even though it’s not a story we would have chosen, it’s our story.  We’ve decided to continue to share.  We’ll share our memories, our pain, our journey.  We’ll share our healing and our hope.  We’ll share our hearts and our words.   We’ll share our children.

Our Winnie: peaceful, beautiful, radiant, mild, soft, content, darling
Loved very much.

Our Clive: joyful, strong, alert, courageous, beautiful, precious 
Loved very much.

3 thoughts on “a few answers about Winnie

  1. Brent R Jones says:

    Thanks for this detailed sharing. We grieve with you and Sam. I am not sure how mom and I would have coped. May God keep your hearts tender toward Him and all other people. May the Spirit of Christ touch you every moment as you suffer.


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