am Kelly Rosberg and my son is Amos he is full trisomy
18. I have 6 other children without problems in Nebraska
and I did not know Amos had this before he was born.
He was born at a regular hospital in Norfolk, Nebraska.
My doctor had done many ultrasounds for extra amino
fluid , but never detected any problems.
I went in for my 36 week visit
and the doctor did a ultrasound and stress test. He
said we needed to do a emergency C-section and that
things would be fine since the baby showed over 5 lbs.
Well neither were right..Amos was 3lbs 12 oz and not
breathing. He had to be air lifted out to Omaha over
3 hrs away. I didn't even get to see him.
I was so depressed because
I was by myself (hubby watching the kids) and thinking
my baby was going to die without me.
I got to the hospital a few
days later and he was still hanging on. He was on a
vent, and the first thing they told me was he was never
going to do anything (move, think, talk). I told them
if that was the way they felt we were going to another
hospital . We were transferred to Omaha Childrens later
Two days later he was off the
vent. We continue to fight tooth and nail to get information
on his problems and what would help him. Next
we found out he had a 7 mm hole in his heart. We asked
to have it fixed and the doctors said no. I asked again
and again and at one month old (which he was no suppose
to make it too) they agreed to the surgery. He made
it through and was doing well in no time. At three months
we were sent home with no further evaluations.
After 2 weeks at home Amos was sick again having many
periods of Apnea. With tried to take him to the hospital,
but they would not take us because of the trisomy. I
am so sick of this! We drove 2 hrs to Sioux city IA
and went to the ER. They did not want us either but
my husband threaten a lawsuit and they gave him cpap,
which really helped him and the Apnea. The doctors called
around the 9 hospital and no one would take us, not
even Omaha the ones who did his heart surgery. So I
told them he was staying there until someone got us
a cpap at home. We ended up staying there 65 days!
Amos is still fighting to live.
Finally through prenatal
partners for life and Mary, we found a new friend whose
son had T18 and was 5 yrs old. Marta called
her doctor and told him about us. I called him
and he flew us out the next day to be fully evaluated
at Children's of MN (7 hours from home).
Well to make a very long story shorter, we have
had many wonderful things happen for Amos. He is still
fighting to live and to get home. He is 16 lbs and 11
months old now. I know I am doing the right thing by
fighting for his life, especially when he looks at me
and smiles. A smile makes everyday a blessing.
I know I may not have long with him, but who reallys
knows except God! I will leave that up to him. We are
now ready to go home and waiting on nursing and equipment.
Amos sounds and looks complicated on paper but in real
life he loves everyone waiting on him hand and foot.
He especially loves his momma's voice. I hope to hear
his some day!
to Trisomy 18 Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.