Baby Magdalyn

Our twin loss story.

I want to share our baby loss story, somewhat, to some extent, to try & share but it’s a very big deal for me to rummage into that extremely intense time period that I shared so intimately with my daughter Lily.

Also, I met a lovely man called Chris on the South West Coastal path a few weeks ago now, who was running a marathon a day, for every day that his baby daughter Anabella lived, 28 marathons in 28 days. We connected instantly, it was day 8 of his marathons, I told him my baby granddaughter was born later in the same summer as his daughter, 2018 & had died at 8 days old, we were both very touched by each others stories & spoke for a while. This is his website https://walkforanabella.com

Our baby died ultimately from the same cause as Anabella. NEC is the heartless taker of vulnerable premature babies, but it was precipitated in our case by a serious malfunction of the placenta throughout pregnancy. Approximately 1/10 identical twin pregnancies fail to some extent, meaning that either one or both babies is lost. Identical twins are about 10 times more rare than fraternal twins & TTTS/TAPS which we had only occurs in about 10% of those, hence there was no first hand knowledge of this level of complication actually experientially at our SCBU.

I had meant to contact Chris but it meant looking back at what happened too deeply, which is so very difficult & triggering, it wasn’t quite the right time for me.

Well, it’s the twins birthday tomorrow & I recorded a little narration of thoughts that came up for me last night whilst I was out in nature thinking aloud, processing a bit.

Slightly confusingly, I thought I had failed to record my words so the second video is a beautiful bit of sunset where I bemoan my techno inadequacy but I’m going to share them both because the lightening effect of the second video plus a proper bit of sunset whilst talking about talking about her seems appropriate to me. She was not a ‘barely there baby", that phrase rolled off my tongue to describe the sky in the first video & I call her that but that's wrong, she was only barely there in the time she gave us. She was an altogether there baby, who did not cry at birth because she was intensely studying her new environment, wide eyed with, what seemed to me, in that first moment of seeing her, the appearance of an adept.

I can’t really explain how I feel or what I think about what happened. I have lots of conflict about some of the protocols that we had no say about at the hospital, that I feel contributed to her loss but it’s too much to go through, it’s too detailed as well as much too fraught.

The basic situation was that we had a very complicated identical twin shared placenta pregnancy from about 16 weeks & whilst we were told there was chance of loosing one or both babies, at the time of their birth we had every reason to believe we had all made it.

So, the week that followed in the Special Care Baby Unit was, well, its still much too hard for me to describe. Very many parents that experience ICU/SCBU/NICU care with newborns get a degree of PTSD. Lily absolutely has lasting PTSD from such a very difficult pregnancy as well as from the hospital. Lily also has PTSD or PTSD-like issues stemming from a very difficult childhood with an undiagnosed mentally ill mother & especially, especially misadventure & abuse during her teens.

Here are my 2 little videos I mumbled my way thru last night.

Here’s my baby girls when they were briefly, far too briefly reunited on release from the incubators. Magda got sick very suddenly & went downhill very fast. Really, she left in less than 24 hrs of this photo. She is the paler baby on the left, Pan is a bit more red, this was due to the TTTS/TAPS condition we had.

The ever present hole she’s left is the space she should have been in in our lives but of course she will never leave our hearts.

Here is Pan who is 3 tomorrow 💗  She is awesome.