advertisement
-
Lindsay Metcalf
on Jun 19 2013 - 06:00 AM
My top five most important moments of the summer so far
- read more
mara williams
on Jun 18 2013 - 06:00 AM
Hey, manchild, mama says: clean your room, wash the dishes, don't drink and drive.
- read more
Emily Parnell
on Jun 16 2013 - 06:00 AM
Eating fresh, local produce is good for body and soul
- read more
Jim Cosgrove
on Jun 13 2013 - 06:00 AM
I just want to buy some pants. Please, turn down the music.
- read more
- kim nakahodo - Profile | Pictures | Blog
-
This is a tough blog to write. A friend of mine’s sister is a carrier of a genetic disorder called Trisomy 18 also known as Edwards syndrome. Trisomy 18 is a genetic disorder in which a person has a third copy of genetic material from chromosome 18, instead of the usual two copies.
Being a carrier of the disorder means you have a high chance of having a child with Trisomy 18.
The syndrome has a very low rate of survival, resulting from heart abnormalities, kidney malformations, and other internal organ disorders. Fifty percent of infants with this condition do not survive beyond the first week of life.
My friend’s sister had two healthy and wonderful boys and they decided to go for another. They knew the risks, but if her mother hadn’t tried, her and her sister wouldn’t be here right now.
At 20 weeks, they knew something was wrong. The ultrasound showed a bowing of the spine and clinched fists, signs of Trisomy 18. They had an amniocentesis that came back positive for Edwards syndrome.
After the diagnosis she and her husband are faced with deciding between terminating the pregnancy, or carrying the baby to term. It really is a decision that no parent should have to make. It was a personal decision for them, one of the hardest decision she and her husband have ever had to make.
They decided to carry baby E to term, if he would survive it. They made a promise to each other that there would be no surgeries for him. They could tell by the sonograms that he was not developing correctly. The surgeries would only prolong the inevitable and make his short life full of pain.
Baby E was born over the weekend. The family had a professional photographer there to capture his sure to be short life. Baby E survived the birth and they were able to get some family portraits taken with him before leaving the hospital.
Here is where the story gets hard.
Baby E has stopped breathing several times and currently has a feeding tube. The family has found that if Baby E looses skin-to-skin contact, he is more likely to stop breathing. At first they weren’t going to do the feeding tube, but Baby E can’t eat and breath; he doesn’t have the strength to do both.
They have been sent home since Baby E’s fate is well known… he is not expected to last the week. My friend’s sister is now battling with the game plan they made before Baby E was born and the natural instinct to keep their son alive. They are worried they’re not doing the right thing.
Friends and family are telling her that it would be best for Baby E to fall asleep eternally, but she is staying up all night to make sure he keeps breathing. I can’t even imagine the decision-making processes they are going through. The best-laid plans change when you hold your child in your hands for the first time.
I honestly can’t even think about it without tearing up. It’s hard because several people in the family are chronicling Baby E’s life on various Web sites.
I can’t imagine being in their position and having to make the decisions they are faced with. I hugged Niko-chan a little tighter tonight before writing this blog.
There is not much to say here. Just for them to pray. Pray for him to get better, pray for clarity on whether to get surgeries or not. We will add our prayers for them as well.I don't have any advice, I just wanted you to know I will pray for your family. What a heartbreaking situation. God Bless you all.Has she been in touch with Alexandra's House? They help with hospice for terminally ill babies. It was started by a former nurse at KU whose niece had a similar condition.I do not want to compare my situation with the one you are describing here. Recently, our 19 mo. DD was in the hospital with something that probably should have taken her life. While we sat there watching her, hang in the balance, we became very numb to the situation. It is only now that I look back and realize the mud we drudged through that I wonder how in the world we made it through. Our DD survived, and that is where my story is different. I don't understand what your friend is going through, but I've stared death in the face with my child. It's a position no parent should ever face, and my heart wrenches for your friend and her dear child.That is the saddest story. I can't begin to imagine being faced with such a decision. None of us know what we would do in situation like that. I think, though that I would, like your friend, hang on and love him as long and as hard as I could. I, like her, would want to sleep a minute because I wouldn't want to miss a second of his life. Phew! That's a hard one. I'll will pray for her and her family.My cousin was born with Trisomy 7 & 8. (Chromosome 7 is missing/damaged and 8 doubled itself to make up the difference is how it was described to me at the time.) She turned 11 this week, and it is still so difficult to watch her and her parents struggle. She isn't mobile, she can't talk, and she still has a feeding tube. Still, we all love her very much. I can't imagine the distress your sister's friends are in... I'll be praying for them and all of those that surround them.
June 2013 Su Mo Tu We Th Fr Sa 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 Tagstoddler (21)
thoughts (20)
first time mom (13)
advice (10)
mom (7)
worries (7)
rant (6)
career (5)
retail (5)
boy (4)
daycare (4)
discipline (4)
fatty (4)
food (4)
moving (4)
pregnancy (4)
story (4)
stress (4)
baby (3)
birth (3)
birthday (3)
cat (3)
christmas (3)
concern (3)
disney (3)
emergency (3)
family (3)
kids (3)
mothers day (3)
pregnant (3)
sick (3)
son (3)
toddlers (3)
widow (3)
working (3)
almitra (2)
anger (2)
asthma (2)
autism (2)
bathroom (2)
big (2)
biracial (2)
car (2)
car trip (2)
choice (2)
crawling (2)
daddy (2)
first (2)
friends (2)
fun (2)
grandparents (2)
holiday shopping (2)
horror stories (2)
job (2)
laughing (2)
lovely (2)
milk (2)
mmr (2)
new job (2)
night out (2)
poop (2)
road trip (2)
room (2)
school (2)
schools (2)
spending (2)
teething (2)
toys (2)
travel (2)
vote (2)
wedding (2)
whine (2)
work (2)
18 (1)
alter (1)
amber (1)
american (1)
angry (1)
anyone (1)
aunts (1)
babies (1)
back (1)
bath (1)
becoming your mom (1)
bed (1)
behavior (1)
beyonce (1)
big love (1)
bilingual (1)
bills (1)
birthdays (1)
black friday (1)
blog (1)
blood (1)
boys (1)
bragging (1)
breaking (1)
budget (1)
cable (1)
cable company (1)
cancer (1)
candy (1)
car seat (1)
challenge (1)
child safety (1)
chirstmas (1)
chores (1)
clawson (1)
cleaning (1)
community (1)
cookbooks (1)
cooking (1)
cosleeping (1)
cousins (1)
crap (1)
cravings (1)
croup (1)
crying (1)
culture (1)
cynical (1)
dad (1)
date (1)
debt (1)
dentist (1)
dh (1)
diaper changing (1)
diet (1)
disaster (1)
dishwasher (1)
divorce (1)
doctor (1)
doctors (1)
dog (1)
drama (1)
drinking (1)
drive-in (1)
driving (1)
easter (1)
eating (1)
ebt (1)
economy (1)
elections (1)
elf (1)
entertaining (1)
er (1)
exercise (1)
expensive (1)
facebook (1)
fairy tales (1)
faith (1)
fat (1)
fears (1)
federal (1)
first birthday (1)
first day (1)
flight (1)
flu (1)
formula (1)
from (1)
frustrated (1)
frustration (1)
funding (1)
fundraiser (1)
fundraisers (1)
furlough (1)
future (1)
games (1)
garage sales (1)
gear (1)
gift (1)
girls (1)
give (1)
golden girls (1)
government (1)
growing up (1)
guest (1)
guilt (1)
guns (1)
hair (1)
hair cut (1)
halloween (1)
hater (1)
hatred (1)
hbo (1)
healthcare (1)
help (1)
hero (1)
hippy (1)
hoax (1)
home (1)
homeopathic (1)
homework (1)
hormone (1)
horror (1)
house project (1)
husband (1)
idol chit chat (1)
imdb (1)
infant clothes (1)
insurance (1)
internet (1)
interracial (1)
iphone (1)
issues (1)
jealous (1)
job loss (1)
jobs (1)
junk (1)
kc (1)
king (1)
labor (1)
late (1)
laundry (1)
learning spanish (1)
lets (1)
lets move (1)
list (1)
local (1)
locks of love (1)
long distance (1)
m2m meet-up (1)
magazines (1)
marriage (1)
mcdonald (1)
memories (1)
michael jackson (1)
milwaukee (1)
mistakes (1)
moms day (1)
move (1)
movies (1)
multiple kids (1)
multiple moms (1)
names (1)
natural (1)
nerd (1)
new friends (1)
new house (1)
new mom (1)
newborn (1)
night (1)
nighttime (1)
obese (1)
obesity (1)
obsession (1)
octomom (1)
opinion (1)
organic (1)
organic milk (1)
parenting (1)
parents as teachers (1)
park (1)
parties (1)
party (1)
pet (1)
peter pan (1)
phase (1)
phone (1)
pictures (1)
pixar (1)
plan (1)
playgroup (1)
politics (1)
poll (1)
potty (1)
pre-teen (1)
pregancy (1)
prepare (1)
preparedness (1)
presents (1)
pride (1)
priorities (1)
public service (1)
raw milk (1)
real estate (1)
reality check (1)
relationships (1)
restaurant (1)
returing to work (1)
ronald (1)
safety (1)
sahm (1)
sayings (1)
scary (1)
school district (1)
second (1)
second baby (1)
sex (1)
shelf (1)
shooter (1)
shower (1)
sickness (1)
side (1)
silly (1)
sleeping (1)
sleeping through the nigh (1)
sleepless (1)
sleepovers (1)
soap box (1)
soft (1)
soul (1)
spanish (1)
spongebob (1)
strollers (1)
summer (1)
tantrums (1)
taxes (1)
temper tantrums (1)
terminal (1)
terror (1)
texting (1)
thankful (1)
thanks (1)
things (1)
three (1)
time (1)
tips (1)
tooth (1)
tornado (1)
toy story (1)
trisomy (1)
tv (1)
uncles (1)
vacation (1)
vaccinations (1)
vaccines (1)
valentine (1)
vampire (1)
vegetarian (1)
veteran (1)
video (1)
villan (1)
visit (1)
vocabulary (1)
weather (1)
wills (1)
wondering (1)
working moms (1)
yo gabba=gabba (1)
young (1)
zombie (1)