Chapter 07

We had another appointment with the specialist at Hospital X to get an ultrasound and meet with the Maternal Fetal Medicine doctors again to discuss any changes and the results of my Maternit21 test. Again, as I laid down for the ultrasound, I couldnt bear to watch my sweet little baby bouncing around on the screen, knowing I wasnt going to get to keep her. I asked the ultrasound tech to turn my monitor off. I felt terrible for doing this, but if I had to watch, I never would have made it through the ultrasounds at that point in my grief. After she was done, she went out to get the MFM doctor. Again, like last time, the MFM doctor came in and took the wand and looked at Allison for a minute or two on his own. When he was finished, I sat up, wiped my belly off, and without even giving me a minute to compose myself, the MFM doctor started into his whole speech about Allison. She did have a heart defect, she did have a cleft lip and palate, this time he said something about her kidneys, and that she DID in fact have a brain abnormality called Dandy Walker Malformation. He was very matter of fact. Very cold. And he goes on to remind me that my daughter has been diagnosed with Trisomy 13. He went on to tell me that it didnt matter where I delivered my baby, because she would die anyway. It was a goal of mine to have hert a where there was a NICU in case she did better than expected so she could get any care that she would need that wasnt invasive to make her comfortable. This doctor didnt find it even necessary to do that. He told me if we even had a live baby at birth, which was extremely unlikely, that she would only live a few moments if that. She was terminal and that was it. He said that from now on their care would be directed at ME. There was no more need to monitor her. He said I was welcome to come back there, but that if I wanted to just continue my treatment at the hospital in which my doctor was staffed (which did not have a NICU) that that was fine too. I walked out of there devastated. I felt hopeless, and like everyone had just given up on my little girl except for my husband and I. She was still very much alive. She kicked each day. How could I just write her off? How could I not bond with her? After a few days of moping and feeling extremely helpless, I was reminded of a very dear friend of mine, a girl whom I had never met but had been following her story of her daughter living with Trisomy 8 (much like how you all are following our journey). She faced these same things. She was told her child was incompatible with life, and her child LIVED! She was told her baby would never laugh, cry, see, think or do anything, and she does EVERYTHING! Her child was a miracle and I watched that all unfold. Her mommy didnt give up on her….and I wasnt going to give up on my daughter either!! After talking to my friend, I decided to make an appointment with my Pediatrician. She got me in immediately and just she and I sat in a room and talked about Allison. What her diagnosis meant and what to expect. My Pediatrician hugged me, she told me that as a mom she would want the same things I do for her child. I didnt want her to feel pain or suffering, but I wanted her to have the chance to LIVE if she was able! My pediatrician referred me to a different hospital, Barnes Jewish/Childrens hospital in St Louis. Her office arranged for us to meet with the MFM doctors there, have another ultrasound done, and then meet with a pediatric cardiologist to get a good look at Allisons heart and get a second opinion, and after that, we were to meet with a Neonatalogist (one of the best ones in the city) and tour the NICU. They arranged all of the appointments to happen in one day since the hospital was close to an hour from us. I still think that seeing my Pediatrician and having her refer us to Barnes was the best thing I did for Allison.

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