Posted on 07/07/2006 7:42:15 PM PDT by richardtavor
More urgent prayer requested for baby Clare. She was born 3 days ago at 1 lb, 14 Oz, and is fighting for her life. The grandmother told us that the Doctors diagnosed Triasamine? and some brain damage. They intend to un plug her in the morning. Do any of the preme parents that wrote in tell us what Triasmine is? At this point, we need a miracle for this little one to survive...thanks to all for their prayerful concern...
God bless and keep Clare.
One of the Prayer warriors said it was Trisomy 18, this fits the symptoms...thanks
Ping
My prayers for Clare and family.
Prayers just sent for baby Clare, and her parents.
trisomy 18 is a completely different disease from trisomy 21(downs)
trisomy 18 is also known as edwards syndrome.
it is universaly fatal. if not now, then in the coming days/weeks.
i agree with the physicians. comfort measures is appropriate.
proverbs says "give strong wine to the dying"
godspeed little one.
Our prayers to Clare and your family from all of us at Temple Beth Am on this night.
Prayers up. This is such a sad situation.
For those who don't know, here is some information about the syndrome they are talking about:
Trisomy 18 syndrome is a disorder of human chromosomes which occurs in approximately 1 in 6,000 live born infants. Trisomy 18 is due to the presence of an extra #18 chromosome. Over 90% of infants with Trisomy 18 syndrome will have a full trisomy while the remainder will have a trisomy due to a rearrangement called a translocation or have mosaicism (two different cell lines).
Infants born with Trisomy 18 usually have small size at birth. There is a recognizable pattern of physical features that often allow the health professional to make the diagnosis of the syndrome. These physical findings are not medically significant but provide clues. They include: prominence to the back part of the head, short eyelid fissures, small mouth and jaw, external ear variations, clenched fist with index finger overlapping the third and 5th finger overlapping the 4th, small fingernails, underdeveloped or altered thumbs, short sternum (breastbone), club feet and redundant skin at the back of the neck.
Synonyms: Trisomy 18
Edward Syndrome
Trisomy E
Trisomy 16-18
(these last two terms are usually not used at the present time)
Major impact of Trisomy 18 is a predisposition to congenital malformations (birth defects), increased infant mortality, and a developmental disability in older infants and children.
Birth Defects
The congenital malformations involve the medically and significant findings mentioned above as well as the presence of some internal or external birth defects. The most common and important is a defect of the heart. Over 90% of children with Trisomy 18 will have a congenital heart malformation; these include: ventricular septal defect – an opening between the lower chambers of the heart which prevents the heart from pumping blood correctly (a heart murmur is generally heard from this finding); atrial septal defect – an opening between the two upper chambers of the heart making it difficult for the heart to pump sufficient oxygen rich blood to body tissues (a heart murmur is often heard); patent ductus arteriosis – a heart defect involving the lack of closure of the channel that usually closes near the time of birth. This then is a persistence of the opening of this channel. In addition, children with Trisomy 18 usually have an alteration of one of the four heart valves. This combination is referred to as a ventricular septal defect with polyvalvular dysplasia. About 10% of children with Trisomy 18 will have a life threatening heart defect noted before or soon after birth. These include a double outlet right ventricle and hypoplastic left heart.
Medical Problems
The increased occurrence of infant mortality is related to a combination of factors but most importantly central apnea, where the brain does not give the message to breathe. Other complicating factors include difficulty feeding with aspiration with a predisposition to aspiration pneumonia, and under development of the lungs. The heart defects can play some role in this but are usually not the only cause of this increased mortality. Important and common birth defects seen in Trisomy 18:
* Congenital heart defects 90%
* Multiple joint contractures 10%
* spina bifida
* hearing loss >50%
* radial aplasia (underdevelopment or missing radial bone of forearm) 5-10%
* cleft lip 5-10%
* birth defects of the eye 10%
Common Disorders in
Trisomy 18
* feeding difficulties
* gastroesophageal reflux
* slow post natal growth
* apnea
* seizures
* kidney defects
* urinary tract infections
* developmental disability
* scoliosis
Prayers going up for baby Clare - what a pretty name.
The medical literature says that 5-10% of Trisomy-18 babies *do* live past 1 year old and some have lived to their teens. Miracles do happen.
Bless her family--this is heart-breaking.
Amen to that. Prayers for her and her poor parents...
Prayers have been sent up.
Prayers have been sent up.
Praying for baby Clare and her family.
Thanks, I agree--she probably won't make it. But my prayer is that G-d save her, and if not, to comfort the family and bring Shalom to them all. Reminds of a quote from Rabbi Tsvi G. Schur in his book "Illness and Crisis, Coping the Jewish Way", in which he quotes from Chaim Potak. 'As he looked on a dead bird in front of his house.' "Is it dead, Papa?" 'I was six and could not bring myself to look at it.' "Yes." I heard him say in a sad and distant way. "Why did he die?" "Everything that lives must die." "Everything?" "Yes." "You too, Papa? and Mama?" "Yes." "And me?" "Yes," he said. Then he added in Yiddish. "But may it be only after you live a long and good life, my Asher." I couldn't grasp it. I forced myself to look at the dead bird. Everything alive would one day be as still as that bird? "Why?" "That's the way the Ribbono Shel Olam (G-d) made his world, Asher." "Why?" "So life would be precious, Asher. Something that is yours forever is never precious." May this family find Shalom no matter what the will of G-d is..may he be merciful and heal this innocent child and cause her to be a testament to his Name....I give thanks to all of the prayers generated by the prayer warriors on this forum...
Please post your replies to richardtavor
richardtavor, My prayers continue for this new baby and the baby's family. God's protection for Clare...God's comfort for Judy and the family. I pray for God's intervention in her care. I pray he gives her the will and the ability to survive
Blessings,
trussell
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Our first one was 6.5 weeks early, born at 4 lbs. 12 oz., and she just turned four today. Still, it's hard to imagine what little Clare's parents are going through. May the Lord carry all of you through this difficult time.
Prayers for this little baby.
Prayers for little Clare and her family.
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