Author Topic: Death of my great-niece  (Read 47 times)

Pippa

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Death of my great-niece
« on: February 11, 2020, 11:01:21 PM »
Last year my niece and nephew in law were expecting a daughter.  It was a stressful pregnancy as they were told their baby could have Down's Syndrome. Trisomy 13 (Patau's Syndrome) or Trisomy 18 (Edward's Syndrome) then they were told their baby was okay.  About 7 weeks before their daughter was due my sister rang me to let me know she had Edward's Syndrome and my sister didn't want me to find out after the baby was born.  I appreciated being told as it gave me and my husband time to get used to the fact that our great-niece could die before being born, during birth or for a short time afterward.

Babies with Edward's, as a rule, don't live long and only 5% live to early adulthood but it isn't life as they have mental and physical disabilities.  I prayed that she would live long enough that the family could spend time with her and she wouldn't be born with her intestines outside her body. Both prays were answered and Chloe lived for a day.  Our great-nephew saw his sister and had pictures taken with Chloe including him holding her but didn't see her the next day as she was very poorly.  My nephew in law has a son by his first marriage but our step-great nephew didn't visit (lives in a different county with his mother) as it was too upsetting.  We didn't go to the hospital as we live about 260 miles away and we didn't know if we would be able to get there in time.

We did go to the funeral as we wanted to show our support and I know it was appreciated.  If I could have died so Chloe could have had a life and be healthy I would but being supportive is the only help we can give which includes keeping Chloe's memory alive.  They have Chloe's shelf which has stuff on it that had been bought for Chloe and given since then and we have bought things for the shelf.  The funeral was incredibly sad obviously but I am so proud of my niece for getting through the day and she has plenty of support around her.   

Lost Mother

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Re: Death of my great-niece
« Reply #1 on: February 12, 2020, 07:53:11 PM »
That's so sad, I hadn't heard of Edward's Syndrome and I can't imagine going through a loss like that :text37: