Outraged and hurt!
It's with a heavy heart that I write this entry. I'm fired up, so if this is long please bear with me. It was brought to my attention on Wednesday night that there was a TV show featuring Anencephaly, the condition my precious daughter and my nephew were diagnosed with and died from. It was a post on one of my Facebook support groups that tipped me to the show and warned that the program (Harry's Law, NBC) was showing Anencephaly in a distorted and downright disrespectful light.
I didn't catch the beginning of the show, but I did see the last 20 minutes or so.
For a little background information, Anencephaly is a "neural tube defect," which in simple terms means that the baby's brain and skull does not form. Spina Bifida is when the other end of the neural tube does not develop. Gabrielle's neonatologist said her particular case was one of the worst he had seen. He gave her an hour to live. God blessed us with 14 hours with her.
The jist of the show was that a mom was accused of killing her 3 day old baby. First of all, most babies with Anencephaly only live a few hours if they even make it through the birth process. There has been some babies who live for a few days or even a week, but it's rare.
In the show they portrayed this baby boy as having a survivable condition that would leave him blind, deaf and not being able to function. Basically in no uncertain terms a big burden to the parents. There was a quote in the show referring to this boy as being like a "houseplant."
In my womb, Gabrielle was just as active as my 3 other children. She was more active at times I think. After she was born, Gabrielle was very alert. I don't know if she was able to see. It seemed like she was able to hear. She definitely did not like her bath. It was the only time she made a sound. She was able to be fed. Once by bottle and then by syringe. She made bubbles and sucked her thumb. She was such a tiny little treasure to hold! Her problem was obvious, which we covered with a hat (I still have her original one which was too big) but from the mouth down she was perfect! She was a big girl! Her ultrasound measured her as 9 lbs. She was 7 lbs. 3 ozs.
In the TV show, this mom carried her son to term, but it was obvious she was not happy with her decision. The more that I have found out about this show, the more upset I have become. This is what really got me livid and outraged. There is a feature on Harry Law's website asking viewers to vote for their favorite "best quote." Quote #5 "I have never denied that his death was most likely a blessing, only that I had nothing to do with it," said by the character Julie.
I quickly responded. "How in the world can you even consider this a best quote that a woman considered her baby's death a blessing? Are you serious? As a mom of a anencephaly baby, this quote hurts! My baby girl was a blessing, not her death. I cherished every moment I had her. I know I'm not alone. Check your facebook page!"
Yes, my daughter was a blessing. I have tried through the years to use my experience to encourage and support other families who have lost little ones. I consider that part a blessing, but I sincerley wish my daughter was here! Even if she had survived and had handicaps, I would love her no matter what!
My hurt is for the obvious disrespect for life. What if they were accurate in the fact that this baby would live with major handicaps? Their message was clear that "mercy killing" was acceptable. It hurt because it brought back memories good and bad of my experience 12 years ago. My dr. was not supportive of our decision to carry Gabrielle. The delivery and NICU staff was absolutely wonderful and compassionate though. Unlike the nurse in this story that it came out in the end that she was the one who killed the baby.
This time of year is very emotional anyway. Gabrielle was born on 12/29/99. She died early the next morning.
Thanks for letting me share about this very sensitive subject.
I didn't catch the beginning of the show, but I did see the last 20 minutes or so.
For a little background information, Anencephaly is a "neural tube defect," which in simple terms means that the baby's brain and skull does not form. Spina Bifida is when the other end of the neural tube does not develop. Gabrielle's neonatologist said her particular case was one of the worst he had seen. He gave her an hour to live. God blessed us with 14 hours with her.
The jist of the show was that a mom was accused of killing her 3 day old baby. First of all, most babies with Anencephaly only live a few hours if they even make it through the birth process. There has been some babies who live for a few days or even a week, but it's rare.
In the show they portrayed this baby boy as having a survivable condition that would leave him blind, deaf and not being able to function. Basically in no uncertain terms a big burden to the parents. There was a quote in the show referring to this boy as being like a "houseplant."
In my womb, Gabrielle was just as active as my 3 other children. She was more active at times I think. After she was born, Gabrielle was very alert. I don't know if she was able to see. It seemed like she was able to hear. She definitely did not like her bath. It was the only time she made a sound. She was able to be fed. Once by bottle and then by syringe. She made bubbles and sucked her thumb. She was such a tiny little treasure to hold! Her problem was obvious, which we covered with a hat (I still have her original one which was too big) but from the mouth down she was perfect! She was a big girl! Her ultrasound measured her as 9 lbs. She was 7 lbs. 3 ozs.
In the TV show, this mom carried her son to term, but it was obvious she was not happy with her decision. The more that I have found out about this show, the more upset I have become. This is what really got me livid and outraged. There is a feature on Harry Law's website asking viewers to vote for their favorite "best quote." Quote #5 "I have never denied that his death was most likely a blessing, only that I had nothing to do with it," said by the character Julie.
I quickly responded. "How in the world can you even consider this a best quote that a woman considered her baby's death a blessing? Are you serious? As a mom of a anencephaly baby, this quote hurts! My baby girl was a blessing, not her death. I cherished every moment I had her. I know I'm not alone. Check your facebook page!"
Yes, my daughter was a blessing. I have tried through the years to use my experience to encourage and support other families who have lost little ones. I consider that part a blessing, but I sincerley wish my daughter was here! Even if she had survived and had handicaps, I would love her no matter what!
My hurt is for the obvious disrespect for life. What if they were accurate in the fact that this baby would live with major handicaps? Their message was clear that "mercy killing" was acceptable. It hurt because it brought back memories good and bad of my experience 12 years ago. My dr. was not supportive of our decision to carry Gabrielle. The delivery and NICU staff was absolutely wonderful and compassionate though. Unlike the nurse in this story that it came out in the end that she was the one who killed the baby.
This time of year is very emotional anyway. Gabrielle was born on 12/29/99. She died early the next morning.
Thanks for letting me share about this very sensitive subject.
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