Wednesday, 1/23/08

I’m sorry for my delay in sending out an update on Lauren and Jace since Lauren’s tests on Friday.

Lauren is home from the hospital and trying to rest as much as possible. She has periodic contractions but seems relatively stable now. We received difficult news Friday from the geneticist and the OB specialist. It appears from the ultrasounds that Jace carries ‘markers’ for a condition known as Edward’s Syndrome. Second to Down’s Syndrome in occurrence, Edward’s Syndrome is one of only three autosomal trisomy conditions known to allow live births. Let me explain just a bit. Humans have 23 pairs of chromosomes with the 23^rd pair being the sex chromosomes. The other 22 pairs are called autosome chromosomes. A trisomy condition occurs when any one of the 23 pairs ends up with 3 chromosomes rather than the normal two. Jace appears to have a tripling of the 18^th pair, thus Edward’s Syndrome is often called Trisomy 18. Actual genetic testing has not been done to confirm this potential diagnosis. Trisomy 18 has an almost 100% mortality rate within the first year of life if the baby makes it to birth. Most are lost within the first or second trimester of pregnancy. This condition contains multiple organ system involvement. Specifically for Jace, some of his problems are kidney/ureter/bladder blockage, a constricted aorta and a too small left ventricle (which is the part of the 4-chambered heart that pumps blood through the aorta and throughout the body), too small stomach, clubbed feet, clenched fists, small size, small head, but not necessarily mental retardation. So many of these little ones die shortly after birth that long term prognosis on those that live longer is very limited.

We are all so sadden by this news, but are not hopeless and despairing. We do know God is in this situation, and we know God can heal Jace, but we know that He may very well choose not to do so. We have no idea if we will even get to hold this little guy and enjoy him even for a little while. Lauren and Dan are meeting this challenge with courage, but the day-to-day for Lauren, in particular, can bring tears as they look into the unknown. Right now, Jace is still alive and moving inside her. They have many decisions to make regarding doctors, next moves in regards to testing, where to give birth to him, etc. If he truly is a trisomy 18 baby, most doctors will not do repair work as few survive the surgeries. There are times all any of us can do is groan out our prayers to our dear Lord, for no words seem adequate. Lauren is only at 30 weeks gestation, so she has a long time to wait in patience to see what God will do. She has not been allowed to continue work, so being her mother’s daughter, she is begging for some work to do. Sitting around, especially under these circumstances and with her activity level, is not an easy task.

We thank you for your continued prayer and caring so well for all of us; please continue to pray. Many have asked how to help them, or if they could send something to off-set the current rising medical bills and/or the bills to come. We’ve had several friends suggest that a trust fund or donation fund be set up for them. I’m honestly not sure what Lauren and Dan might think of this, but I do know that their medical bills are mounting, and she has had to quit work.

We can not thank you all enough for the continued love showered on us.
Blessings,
Kathy