I guess I should have Grace’s, and her twin’s story here, since it’s for them that Gardens of Grace began. I was 44 in 2013 when I found out I was pregnant…this was more than a surprise, since I’d had an ovary removed nine years before. Also, we had cats…we were happy with cats…imagine my further surprise when we discovered fraternal twins!
At about 13 weeks, we were then told one twin might have a Trisomy disorder, and if this was the case, would be lucky to make it to birth and not much beyond. At 17 weeks, I started feeling ill, but put it down to morning sickness returning, until I started to feel worse…then I called my local hospital, told them I was high risk, with twins, and that I thought I might be miscarrying. Their response (after calling me back), was to say, sorry, since you are not 20 weeks, the pregnancy isn’t viable so we can’t take you on the maternity ward, it sounds like you have an infection, you could go to emergency but you wouldn’t be a priority, so our suggestion is you take a warm bath.
Crying, I called the IWK, and they said come right in. When I arrived, they told me the compromised twin had died, and it looked like I DID have an infection, so I had to be admitted until they determined what I had. Two days later, they found out it was listeria, one of the worst infections you can get while pregnant…and my water broke. But baby stayed put. They told me I would be in hospital till baby came, even though there was only a 5% chance of it surviving. I was put on complete bed rest and constant IV antibiotics to keep the living twin from being infected…days turned into weeks, chances improved slightly, and the goal was to make it to 24 so we could get steroid injections, even more important since there was no amniotic fluid. They couldn’t tell what baby was because of the lack of fluid, but everyone kept hoping it was a girl, because girls tend to fare better in adverse conditions.
At 26 weeks, I suffered a placental abruption, and baby was delivered by emergency C-section…1lb, 7oz, 12 inches long, a girl. Her first day she was breathing on her own, but then spiralled to the point of needing the oscillator…she was 39 days old before we got to hold her. It took us a week to name her…we had been thinking of Irish names, but many were too difficult to spell or pronounce. I wanted “Grania”, after an Irish pirate who sailed for 60 years…we settled on the English version, “Grace”; her second name became “Neala”, meaning female champion; her third name, “Tamsin”, meaning twin in Cornish. Grace Neala Tamsin. And we eventually just called the twin “Tamsin”, as well. Grace’s NICU experience could fill a book on its own, she basically had a micro-preemie bucket list of complications that she felt she NEEDED to try out, and believe me, she ticked a LOT of boxes.
She finally got out of hospital at seven and a half months old, with a list of follow-up clinics to attend. But, one by one, every clinic said she was doing so well she didn’t need them…normal, happy, talking well, seeing well, physically well…her only lasting ailment was Short Bowel Syndrome that had resulted from having a portion of her bowel removed when she was six weeks old. And even follow up with that had been downgraded in early December of 2016, when she was just past three. It was invisible scar tissue that grew and entangled her bowel without anyone knowing…could have taken days, weeks, months, no one knows, because it can’t be seen on imaging machines. What everyone thought was a simple bowel infection in the early morning hours of Dec 28, 2016, ended in her death at 8:30 that night. No one saw it coming.
Grace’s experiences before birth, and during her NICU days, and in her death itself, helped facilitate both education and change. As events have played out since she left us, it brings me at least small comfort that her little life will go on to help others.
-Paula Harmon
