Baby Amos

Hi, I 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 that day.

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!

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-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.