On Friday (2.19.16) Matt and I arrived at CHOP (Children's Hospital of Philadelphia) at 7 in the morning. I filled out my medical history and we sat in the waiting room, both of us so filled with hope. We were going to see the experts and they were going to make the plan for Omi's birth. Everything in the week leading up to this visit had pointed us toward such a positive feeling and we couldn't wait to have that feeling vindicated.
After finishing 6 consecutive hours of tests (an MRI, ultrasound, fetal echo) the doctors were ready to meet with us. We gathered in a small room around a table. There were 6 of them. A woman doctor headed up the meeting and asked what we had learned up until this point. I told her that we knew she had a cervical teratoma, that she would need to be delivered by an EXIT procedure and that she would spend some recovery time in the NICU post birth. I told her we expected she would likely have a tracheostomy and have to have her thyroid removed. These were all things Matt & I had come to terms with. It was going to be a rough road, but we were prepared and ready to take it on if it meant that we would have our daughter happy and healthy.
She began to expound upon an EXIT procedure and I kind of zoned out because I had heard it all before a million times, I just wanted to know what I hadn't been told yet. In the midst of our discussion I glanced over at her note-filled paper and saw the word "lymphangioma". It was a word that had been brought up to us before, but had been rather quickly dismissed. Most of the specialists we had seen sided against a lymphangioma and leaned toward diagnosing Omara with a teratoma. Therefore, I hadn't researched lymphangiomas. I knew absolutely nothing about them. I felt the pit of my stomach drop out as the doctor said "we do not believe this is a teratoma, it presents more as a lymphangioma and because of that the outcome is going to be a bit different".
Over the next what seemed like hours we learned that Omara had an aggressive lymphangioma that was growing out of her neck (at her carotid artery) and back into the back of her neck, her chest, her mouth and the orbit of her right eye.
The difference between teratomas and lymphangiomas is that teratomas can be removed and they don't tend to grow back into the host. Lymphangiomas cannot be removed because they are made up of important tissues (stemming from her lymphatic system) and they tend to grow rampantly. Even if the lymphangioma can have part of it resected or de-bulked there are chances that it will grow back. Omi's was growing quite quickly and was endangering her lungs, eye and brain.
The doctors discussed with us what her life would look like. The last case similar to Omi's was a little girl four years ago. She was in the NICU for the first year of her life and at four years old requires frequent surgeries, a tracheostomy and feeding tubes. Hearing that was enough to just rip my heart out. I couldn't hold the tears in anymore and I broke down. We learned that although the case of that little girl is similar to ours it was not nearly as aggressive and that Omi's best case scenario is worse than we ever imagined.
Her chances of living to birth or even the age of viability are very small. If she does manage to make it to >27 weeks and the doctors are able to secure an airway at birth - the life she would have is not one I would wish on my worst enemy. Matt and I have had to make a very hard decision and we are meeting with a doctor in Roanoke today to discuss inducing labor in the next two weeks. Our hope is that after delivery she will live long enough for us to hold her and say goodbye. As you can imagine this is an incredibly hard time for us and our families. Please be praying for us and sending positive energy while we put our little girl to rest.