Isabella
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At my 5 month sonogram the doctors discovered a large mass (proportional in size to the baby) coming off of her left jaw area. I went through many doctors and specialists who had never seen such a thing and didn't have too many ideas. I finally found an excellent doctor (Manuel Porto) who was willing to treat us at UCI Medical Center in Irvine. I moved there and he continued to see us until the baby came. A team of doctors, surgeons, pediatric ENT etc. performed the cesarean section while I was under general anesthesia. 25 people were in my delivery room because of the difficulty of the birth. They had to pull my daughter half way out and trach her while she was still connected to me. They also had to drain over 2 liters of fluid from her tumor in order to get her out. The tumor distorted her airway and made it impossible for her to breathe without the trach.
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She was in critical condition and I was too sick to see her for three days because I couldn't get out of bed. I was also a little nervous. The pictures they brought to my room showed a baby with her face melting into the table (the picture above) and it was very difficult. I guess you could say in the beginning she had a face only a mother could love! Once I saw her, all I saw was how sweet and fragile she was. I loved her more than I could of imagined. The tumor started to instantly regrow and they were forced to do a 15 hour surgery to remove it 11 days later.
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She was only a few pounds after the tumor was removed. Upon opening of the tumor, they found hair, organs, bones and the remains of a lost twin to Isabella. They called it a teratoma. I guess the twin died early and attached to Isabella's neck and was surrounded by nerves, blood vessels, skin etc. Its a rare condition thankfully. I still don't completely understand it. Doctors seem to be good at every thing except for explaining in simple terms :-)
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The surgery was very successful but difficult to recover from. The surgery left her with nerve damage to her face which paralyzed her on one side. This has made it difficult for her to eat and she has a g-tube. Anyways, throughout her first year she has had many, many surgeries but she has progressed into a beautiful happy child. She is the sweetest baby ever. She never cries unless she is in pain and she is always content. I hope to be able to decannulate her someday... but just as well if not. I'm happy for this page because it is nice to see that she has a peer group. She probably will need it someday soon.
Update Feb, 2006
Isabella's trach was removed with no complications in 2005 at the age of 2. With the help of many doctors and a thousand little miracles along the way, she is now happy and healthy!
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