CHOP

Our daughter was born and within 12 hours and two hospitals later we were home- all of us except for Alyssa. I couldn't sleep and got on the PC to look up the possibilities of what she could have. I did not know what I was going to get when I typed in Trisomy. I scanned every page I could relating to T18 and thus became more and more disheartened. Nobody told us directly that this was what she had, but I had a nagging feeling; especially because of my conversation with the doctor from our hospital. I grabbed our camera and compared her pictures to the ones I could find on-line and nearly pulled my hair out.

There was a picture of a rocker bottom foot on-line and a picture of Alyssa's foot in our camera. When comparing the two I knew and I cried out in despair. I left the PC and went to bed. Ed was tossing and turning and I said "she's going to die...I don't want her to die." I have a habit of talking in my sleep, so I don't think Ed thought I was fully awake. He thought I was talking in my sleep, but still said "what?!?" I said " Alyssa she has Trisomy 18 and she's going to die, I don't want my little girl to die." Ed rolled over as I cried uncontrollably. I don't remember all that was said but he reassured me that I was going off the deep end, I do tend to look at the worst of things while he is more optimistic. He reassured me enough that I was able to get a few restless hours of sleep.


In the morning I called our Pastor's home. In speaking with Nancy, his wife I confided that I felt the hospital was keeping something from us and I was fearful that it was a diagnosis of Trisomy 18. I ended the conversation as we were getting ready to go to CHOP. Nancy and Pastor Mitch were going to meet us at CHOP later in the day.


After dropping the kids off with friends, Ed and I talked in the car. He feeling confident that everything would be fine and work out and me wanting to believe that but was really unsure. We arrived at CHOP and spent some time with Alyssa. Dr. L came by to say "hi" and engage in some friendly banter, but I wanted answers. She was vague at first because she wanted the entire team there to present their current findings. I pressed on and finally blurted out..."you think she has Trisomy 18, don't you". Surprised Dr. L asked if we had heard of it and we confirmed that we had. She confirmed with us that this was indeed what they thought she had but they would have more answers later...If she said anything else I don't remember Ed and I were crying at this point. In an instant my whole world shrank and I felt smaller and weaker than our 3lb 11 ounce little girl who laid in her isolate in front of us.

An hour or so later, the Pastor Mitch, Nancy, Ed and I along with a host of doctors met and the disclosed the preliminary findings Alyssa has Trisomy 18. We waited for the meeting to conclude before the 4 of us grieved like I never imagined I could or would have to in my life time. We spent more time with Alyssa, then left her and returned home to be with our other kids. We told our eldest son the facts as we knew them, the younger ones just knew that Alyssa was (is) sick.

We met again with the doctors on Thursday in which we received the final genetic report and discussed removing the breathing tube from Alyssa. All the kids were with us and we decided to take pictures as a family for memories sake. Alyssa's breathing tube was removed around 2pm and within an hour not only was she still breathing on her own, she was drinking from a bottle. All her major organs were functioning within the normal limits. Her heart has 2 small VSD's and an ASD; which we don't know how this will affect her. Her diaphragm had herniated into her lungs however did not compromise her lung functioning, again we don't know the affects of this either for her overall health. We know her brain is affected but not to what degree, she hadn't had any apnea episodes. Alyssa spent a week in the CHOP NICU.

Each day was a blessing, especially as we saw her progress. Visit her care bridge page www.caringbridge.org/visit/alyssagraceshihadeh for the daily updates of our time at CHOP.