Aurora’s Journey
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This is our baby girl, Aurora. At our 30-week anatomy scan, we were informed that Aurora had a growth on her neck. We were referred to a high-risk maternal-fetal medicine group in Longview which determined we were higher risk than they could help. We were then referred to a Children's hospital in Dallas, who also informed us that they were unable to help. We've since been referred to UT health professionals in Houston, about 3 1/2 hours from our home.
After hours of testing, it was determined that Aurora has a fetal neck teratoma, an extremely rare birth defect. This very rare tumor is on the right side of her neck and extends to the chest and up the side of her jaw measuring over 10cm. In comparison, Aurora's femur is only 9cm so it is very large and continuing to grow with her. Aurora's mass is compressing her airway and her esophagus. The mass extends to the subcutaneous region of the anterior chest and right face. The mass slightly displaces her heart towards the left.
The survival rate for teratomas is low and requires very closely supervised care with specialists at UT Health to try to make it as close to full-term as possible. Every week we will be receiving ultrasounds and we are required to stay in Houston for close monitoring just in case I go into early-term labor. If she survives to full term, I will be delivering her by EXIT procedure. This procedure is complicated. They will put me under general anesthesia and will partially deliver Aurora's head and shoulders by c-section while leaving her attached to the placenta as a kind of life support. Then they will intubate her, deliver her, and bring her to surgery to remove the mass. She will likely need a tracheostomy, and a feeding tube. There will be a team of doctors and staff in two separate operating rooms during my c-section in order to pull off this very complex procedure and give Aurora the best chance at success. Even in the best-case scenario, Aurora is expected to be in the NICU for 4-6 weeks at least. For me, the only complications are those that normally arise from c-sections as well as a 13% chance of needing a blood transfusion.
The risks to Aurora while in utero are still pretty hard for us to think about. There's a possibility that amniotic fluid could build up in my uterus causing preterm labor which would mean I would go into early-term labor causing Auroras' survival rate to go drastically down. There is a risk of fluid causing her lungs to overexpand and her heart to fail which would cause stillbirth. Right now her heart looks great and as far as we know, there is no genetic cause for her condition. This is just a very rare birth defect. They are the most common neonatal tumor with an incidence of about 1 in 20,000-40,000 live births and affect females more often than males.
As much as we hate to ask for help, we know that we cannot do this without it. Our family has been graciously watching our 2-year-old son Jett so I can stay in Houston for monitoring. Jacobs's work has been kind enough to give him days off with very little notice. Jacob is waiting for a surgery date to take those days off so that we can stay afloat financially at home. In the meantime, my wonderful mother is staying with me. I wasn’t scheduled to go on maternity leave until September 15th so this sudden move is hard financially. Unfortunately, the cost of staying in Houston (gas, tolls, parking, hotels, food) is going to add up very quickly. The staff at the hospital could only offer me so much. Medicaid has denied Lodging assistance for us. We are on a waitlist for Ronald McDonald House for 2-3 weeks, and our hotel that my loving brother has helped us with ends on the 29th. UT Health has not yet given me a surgery date but I know it will be within the next week, and I will need to stay with my baby girl if she survives. We are scraping our savings to make this work but I have to make sure this baby girl has the best chance at living.
We don't know if Aurora will survive pregnancy, delivery, or post-op but we are hoping for the best. We can't thank you all enough for the support you've given us so far and what we know you'll be giving us going forward. Jacob, Aurora, Jett, and I are so grateful for it all.
After hours of testing, it was determined that Aurora has a fetal neck teratoma, an extremely rare birth defect. This very rare tumor is on the right side of her neck and extends to the chest and up the side of her jaw measuring over 10cm. In comparison, Aurora's femur is only 9cm so it is very large and continuing to grow with her. Aurora's mass is compressing her airway and her esophagus. The mass extends to the subcutaneous region of the anterior chest and right face. The mass slightly displaces her heart towards the left.
The survival rate for teratomas is low and requires very closely supervised care with specialists at UT Health to try to make it as close to full-term as possible. Every week we will be receiving ultrasounds and we are required to stay in Houston for close monitoring just in case I go into early-term labor. If she survives to full term, I will be delivering her by EXIT procedure. This procedure is complicated. They will put me under general anesthesia and will partially deliver Aurora's head and shoulders by c-section while leaving her attached to the placenta as a kind of life support. Then they will intubate her, deliver her, and bring her to surgery to remove the mass. She will likely need a tracheostomy, and a feeding tube. There will be a team of doctors and staff in two separate operating rooms during my c-section in order to pull off this very complex procedure and give Aurora the best chance at success. Even in the best-case scenario, Aurora is expected to be in the NICU for 4-6 weeks at least. For me, the only complications are those that normally arise from c-sections as well as a 13% chance of needing a blood transfusion.
The risks to Aurora while in utero are still pretty hard for us to think about. There's a possibility that amniotic fluid could build up in my uterus causing preterm labor which would mean I would go into early-term labor causing Auroras' survival rate to go drastically down. There is a risk of fluid causing her lungs to overexpand and her heart to fail which would cause stillbirth. Right now her heart looks great and as far as we know, there is no genetic cause for her condition. This is just a very rare birth defect. They are the most common neonatal tumor with an incidence of about 1 in 20,000-40,000 live births and affect females more often than males.
As much as we hate to ask for help, we know that we cannot do this without it. Our family has been graciously watching our 2-year-old son Jett so I can stay in Houston for monitoring. Jacobs's work has been kind enough to give him days off with very little notice. Jacob is waiting for a surgery date to take those days off so that we can stay afloat financially at home. In the meantime, my wonderful mother is staying with me. I wasn’t scheduled to go on maternity leave until September 15th so this sudden move is hard financially. Unfortunately, the cost of staying in Houston (gas, tolls, parking, hotels, food) is going to add up very quickly. The staff at the hospital could only offer me so much. Medicaid has denied Lodging assistance for us. We are on a waitlist for Ronald McDonald House for 2-3 weeks, and our hotel that my loving brother has helped us with ends on the 29th. UT Health has not yet given me a surgery date but I know it will be within the next week, and I will need to stay with my baby girl if she survives. We are scraping our savings to make this work but I have to make sure this baby girl has the best chance at living.
We don't know if Aurora will survive pregnancy, delivery, or post-op but we are hoping for the best. We can't thank you all enough for the support you've given us so far and what we know you'll be giving us going forward. Jacob, Aurora, Jett, and I are so grateful for it all.
Organizer and beneficiary
Aryana Pearson
Organizer
Houston, TX
Tasha Pearson
Beneficiary