My Baby Clodagh
Derbhille McGill shares the moving story of her little baby daughter, Clodagh, who was prenatally diagnosed with Trisomy 13, a disability that meant that Clodagh might die before, or soon after birth. However, little Clodagh lived for 33 days and was such a blessing to her family during her short life. Derbhille is sharing this story because she believes that perinatal hospice care must be given to other mothers who receive similar prenatal diagnoses, and that every child has a right to life.
The 18th January 2007 was the day my life changed. I went for my 20 week scan with my husband and my youngest child at that time, expecting to find out the sex of my baby, but instead of finding out whether it was a boy or a girl, we were told that our baby's brain hadn't developed right, similar to anencephaly. It was a cluster of abnormalities and her outcome would not be good, most probably she would die even before she was born. Of course, we were devastated, this was our baby girl, actually to say that we were devastated is an understatement. We were in pieces, we just couldn't cope. Really it seemed as if our whole world had come to an end. How could this be?
We were determined to still follow through with the pregnancy and to love the wee girl I was carrying for as long as we had her. Although I didn't know what was going to be wrong with her, I knew she was inside me and I could feel her, she was moving, growing and kicking, her brothers and sisters were able to touch her in my stomach.
We went up to the Royal every couple of weeks. I never really got any support in the Royal, they just scanned you and sent you home and told you to come back two weeks later. You were left to your own devices, never got any support, never got any counseling, never got any help from anywhere.
"She was never, ever left on her own. One of us was always with her. She brought nothing but joy, nothing but love."
The week before she was born, the consultant told me, "she will only be 3 pounds and will most probably die as soon as she was born." But lo and behold a week later I gave birth to a 7 pound 1 oz baby girl who was absolutely beautiful. She did have six fingers on each hand - to me, each finger was more beautiful than the next!
She had Trisomy 13, Patau Syndrome, she had an extra chromosome 13, they said she was deemed was 'incompatible with life' and would die a few hours after birth. But to us, she was the most beautiful sight to behold.
Clodagh brought joy and love
She came home with us and the joy that wee girl brought to our home was incredible. She was surrounded by love by all her brothers and sisters. They were able to interact wtih her, they got to nurse, change her, play with her, every night, she was never, ever left on her own. She brought nothing but joy, nothing but love. Our whole family came every day, her uncles, aunts, all her cousins came to his house; everybody shared the joy of her live even though it was tainted with the sadness, every day we knew she was going to die.
Then came the day we were expecting. The day our sweet little girl left us. At 33 days old, and at 3pm on a Friday afternoon, Clodagh died in her daddy's arms.
Those 33 days of joy made an impact that will last for more than 33 years for us. We experienced true happiness in celebrating her life. Clodagh got to meet her family. Her family got to know her.
How anyone could suggest that her life would be worthless is beyond me. Our time with her was gift – one we’ll cherish for the rest of our lives.
Clodagh sleeping beside her little brother
Clodagh lived for 33 days, she was loved and cherished by all her family
Derbhille and Clodagh in the hospital after she was born
Derbhille speaks about her baby, Clodagh
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TRISOMY 13 or PATAU'S SYNDROME arises because of the presence of an extra chromosome. There is a significant risk of miscarriage but research has also found that children with Trisomy 13 or live on average for 7 days after birth, while almost 31% live for more than a month, and almost one in 10 live for more than a year.
Rasmussen SA1, Wong LY, Yang Q, May KM, Friedman. Pediatrics. Population-based analyses of mortality in trisomy 13 and trisomy 18. 2003 Apr;111(4 Pt 1):777-84.JM. http://www.ncbi.nlm.nih.gov/pubmed/12671111