Information

There are several conditions which, if diagnosed during pregnancy, can mean that a baby may not live for long after birth, or that he or she might not make it to birth at all. These diagnoses are rare but they can arise for up to 700 babies - about 1% of pregnancies - every year in Ireland. Everyone would feel enormous sympathy for parents faced with a poor or life-limiting diagnosis for their baby. What many parents are not told, however, is that while their children will have a short life, the time they have with them can be hugely joyful and rewarding.

 

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The most common of these disorders

Anencephaly

Anencephaly is a serious neural tube defect which causes the baby's brain not to develop properly. A recent study found that 72% of babies with anencephaly lived for a short time after birth. Of those children, 25% lived up to 5 days, while up to 7% lived up to 28 days after birth. (1) Two children - Stephanie Keene and Nicholas - lived in excess of two years. In one recent case, Baby Faith Hope lived for a wonderful 93 days. Her mother, Myah wrote: "I chose to carry my baby to term for one simple reason: love. Then to everyone's surprise, we were blessed with 3 months and 4 days with Faith before she went to Heaven. She was the sweetest little girl... so beautiful and so full of life. I feel so blessed to be her mother (http://babyfaithhope.blogspot.com/)

(1) Jaquier M, Klein A, Boltshauser E. 'Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.' BJOG 2006; 113:951–953


Trisomy 18

Trisomy 18 or Edwards Syndrome arises because of the presence of an extra chromosome. Quite contrary to recent reporting, studies have found that the average duration of survival for children with Trisomy 18 was 14.5 days; with 38.6% of babies surviving for more than a month, while 8.4% survived for more than a year. (2) Here in Ireland, Elaine Fagan, given just days to live after birth, spent 25 years with her loving family before her death in 2011, confounding all medical expectations. “She has touched so many people. I now know happiness comes from caring and sharing with others. I wouldn’t have found that out if I didn’t have Elaine. It’s thanks to her that I am seeing a lovely side of human nature,” said her father Micheal

(2) Mitchel L. Zoler, ‘Trisomy 18 survival can exceed 1 year’, OB/GYN News, March 1 2003


Trisomy 13 / Patau Syndrome

Trisomy 13 or Patau Syndrome also arises when the baby has an additional chromosome. Research has found that children with Trisomy 13 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. (3) Anthony Arritola lived for twelve months after birth, and his mother Janina said his life had inspired many others to realise "how incredibly precious each and every little life is".

(3) Mitchel L. Zoler, ‘Trisomy 13 survival can exceed 1 year’, OB/GYN News, March 1 2003


Potter's Syndrome, Potter's Sequence and Renal Agenesis

Potter's Syndrome, Potter's Sequence and Renal Agenesis reduced volume of amniotic fluid also arises. It has tended to be associated with a very poor outcome but this is not invariably so, and data shows the outlook may be improving. Doctors predicted that infant Sarah Elizabeth Kaster, like other Potter's Syndrome babies, would never open her eyes, never utter a sound, and never breathe on her own. Her life expectancy was two or three minutes. Instead, she lived 22 and a half glorious hours. During that time, little Sarah opened her beautiful eyes, cried like any baby, and responded to her parents' loving touch. Her mother, Holly Kaster, said that: "Sarah brought me so much joy in the short time she was with me, I look at her life as a total blessing. And I feel honoured to have been her mother."


Much Joy

"Sarah brought me so much joy in the short time she was with me, I look at her life as a total blessing. And I feel honoured to have been her mother." Holly Kaster, mother to Sarah


Support

Soft Ireland

Set up by parents for parents of Trisomy children, SOFT, the Support Organisation for Trisomy, in Ireland, is a voluntary group dedicated to providing support for families of children born with Patau's Syndrome (Trisomy 13), Edwards' Syndrome (Trisomy 18) and related chromosomal disorders. Support is provided during prenatal diagnosis, during the child's life and after the child's passing.
www.softireland.com

 

Laura Lynn 

The Laura Lynn hospice is the first hospice in Ireland to offer services to children with life-limiting conditions. Parents can avail of support in bringing children home from hospital after birth, medical care at home, and end-of-life care.

www.sunshinehome.ie/lauralynn-house.html

Perinatal Hospice

A wonderful support service for families facing a poor diagnosis for their baby. The perinatal hospice service gives parents the gift of time by offering the best possible medical and professional support to everyone involved, and allowing parents to create precious memories of their time with their special children.

www.perinatalhospice.org

Now I lay me down to sleep

A free professional photography service especially for families facing the untimely death of their baby. Remembrance photography is a very important step in the healing process. This wonderful service is available for free for Irish families.

www.nowilaymedowntosleep.org - - and for a list of Irish providers - www.feileacain.org/remembering/now-i-lay-me-down-to-sleep-photographers/

Anencephaly.info

Information about the life-limiting condition, anencephaly, which arises while the child is in the womb. Help is offered for affected parents, caregivers, family and friends.
www.anencephalie-info.org

Be not afraid

Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. There are many inspiring stories of children whose short lives touched so many people.
www.benotafraid.net

TAG - Trisomy Advocacy Group

Trisomy Advocacy Group (TAG) is an organization advocating for the Trisomy community by empowering families and the medical community to make informed decisions regarding the care of Trisomy children.
www.trisomyhelp.org

 


Links & further reading

 

Articles
Testimonies

 

Reports and Research