February 1st - 7th, 2016
When my husband Matt and I arrived at our doctor's office last Monday (2.1.16) we thought it was going to be a routine visit. We had gotten accustomed to seeing our little baby girl wiggle around on the ultrasound screen every few weeks and were excited to see her again. So far everything was going great. We had found out just two weeks prior that she was a girl and in that time already named her - Omara "Omi" Rose.
The ultrasound started and almost immediately after seeing her up on the screen our doctor pointed out a "bubble" that he hadn't noticed on her before. I tried not to get too anxious because he said he wasn't sure what he was looking at and it really could just be nothing. He said he needed to refer us to a specialist and they would be able to give us more answers. The fear of what this could be didn't start setting in until the drive home. I started researching all sorts of growths on babies - branchial cleft cysts, cystic hygromas, etc. Some had hopeful outcomes while others caused lifelong issues and even death. I began imagining worst case scenarios and tried to prepare myself for what we may be told when we met with the specialist. My biggest fear at that moment was that it was a cystic hygroma - which is usually a signal of a greater problem like Turner's Syndrome or a congenital heart defect.
It took three days for us to hear back about an appointment while my doctor worked tirelessly to get us in as soon as possible at UVA. The urgency his office displayed in setting up an appointment for us made me realize just how significant this could be. Finally I received a call that we had an appointment scheduled for Friday (2.5.16) morning at UVA's Maternal Fetal Medicine center. We reached out to family and close friends to let them know that we were going to see a specialist and for them to be praying and sending positive thoughts our way.
The appointment started with us meeting with a geneticist for an hour. We worked through our family health histories and talked about some tests that they may be performing on us. Blood tests or amniocentesis to check the chromosomes of our baby. The geneticist said we would know more about what tests we need to do after the ultrasound and sent us to see the sonographer.
My husband and I tried to remain in good spirits as I crawled up onto the bed. Immediately when we saw Omara appear on the screen we could see that the growth had increased and spread further around her neck to the back of her head. A giant wave of fear spread over me. I saw that there were multiple cysts inside what previously looked like a single fluid filled sac. This ultrasound showed far more detail than the one at our OB's office. The sonographer said that it's hard to say based on the ultrasound our OB did if the mass had grown further around in the past few days or if it was just not detailed enough for us to see and had already been that large, but I knew it was different. What had looked like a "bubble" before now was enveloping half of our baby's face. The sonographer did her best to answer the millions of questions I had while she measured the rest of our little girl's organs. Everything else looked great.
The ultrasound felt like it took an eternity. My feet began to fall asleep from being in the same position for so long. Once she finished obtaining all of the necessary measurements and images she told me to sit up and that she was going to get the doctor. It was only a few minutes later when the doctor walked into our room. He sat down at the ultrasound machine and looked through the images she had taken. Then turned to talk to us about what he saw.
...And here comes the part that I don't even know how to put into words. I'm not sure I really remember everything that was said leading up to the point where he told us just how serious this "giant neck mass" was. I could hear what he was saying, but my brain wasn't fully processing it. The doctor told us that the giant mass consisted of small and large cysts, solid parts and blood flow. Blood flow. I knew that this was not good. He said this mass is most likely a rare tumor called a teratoma or possibly a lymphagioma - it could be malignant or benign, but they wouldn't know more until they did an MRI. We were told that these masses are so rare that the hospital only sees 1 case every 2 - 3 years (later research showed me that it happens every 1 in 20,000-40,000 pregnancies). He continued to say that this condition was not genetic, that they don't know what causes it and that it can be fatal to the baby. He said it would probably be in our best interest to terminate the pregnancy since the chances of her dying were pretty inevitable. He then said that he would leave us to process and discuss what we want to do. Matt and I both immediately broke down. We didn't want our baby to die and we most certainly didn't want to kill her. We didn't want to be even thinking about these as possibilities.
In all of my research leading up to this visit I hadn't even considered a teratoma as a possibility. It hadn't even popped up on my radar. How could this be happening? They can't be talking about our baby.
When the doctor came back in the room we told him that we wanted to give Omara a fighting chance and we would do whatever we needed to for that to happen. He said he understood and that they would call us Monday with a follow up appointment sometime in the next two weeks where we would do an MRI. Meanwhile, we needed to continue to monitor the growth of the mass over the next few weeks by doing frequent ultrasounds. The doctor's were pretty candid about the fact that this is something that their hospital doesn't see a lot of, which led Matt and I to want to seek other opinions. We have an appointment tomorrow morning at Wake Forest Baptist and are planning on reaching out to the Children's Hospital of Philadelphia as well as the University of Chicago.
On our drive home we called our parents and told them the news. I think that was the hardest part. Telling them made it real. My mom is out in Nebraska visiting my aunt and cousin (who is a surgical tech). My cousin immediately texted me an article about the University of California at San Francisco and how they're experienced with these cases. We had a two and a half hour drive home so I figured I would call and get as much information as they were willing to share.
I honestly didn't think I was going to get through to anyone, but after three rings a nurse picked up and she was so willing to answer any questions I had. Her answers gave me hope, but also a whole new fear. She made me aware that these children a lot of times can face really hard lives whether it be tracheostomies, feeding tubes, thyroid issues, speech problems or deformities. And with that, it just got real again. The UVA doctor's voice started to creep back into my head saying that terminating was best for the baby. I didn't want to believe that though. I wanted my little girl. So I started to research.
Over the last few days we have done a lot of research (on-line and talking to friends/family in the medical field) and are hopeful. We know we have a long road ahead of us, but there are really inspiring stories out there of families who have gone through the same journey. These children while some have struggled, mostly seem to end up living normal lives. We know it can be done and that we have a chance to have our daughter safe and sound with us.
My hope is that this blog can be of help to any future mothers and fathers who will be facing the same uncertainty and fear that we are. I am looking forward to updating this blog with happy updates. Below are some links for mothers/fathers who are looking for some stories with positive outcomes. Please reach out to me if you are going through this or have gone through this. I would love to speak with you.