Milo's Cervical Teratoma

This is our baby boy, Milo. At our 21 week anatomy scan, we were informed that Milo has a growth on the side of his neck. We were referred to a high-risk maternal fetal medicine group about an hour away who determined we were higher risk than they could help. We've since been referred to Massachusetts General Hospital in Boston, about 3hrs from our home. After hours of testing it was determined that Milo has a cervical teratoma, an extremely rare birth defect. This very rare tumor is on the right side of his neck and is extending to the front and up the side of his face measuring over 5cm. In comparison, Milo's femur is only 4cm so it is very large and continuing to grow with him.

The survival rate for teratomas is low and requires very closely supervised care with specialists at Mass General to try to make it as close to full term as possible. Every 2 weeks we will be receiving ultrasounds and once per month we'll have a full day of services in Boston that require us to stay overnight.

Milo's mass is compressing his airway and his esophagus. If he survives to full term, I will be delivering him by EXIT procedure. This procedure is complicated. They will put me under general anesthesia and will partially deliver Milo's head and shoulders while leaving him attached to the placenta as a kind of life support. Then they will intubate him, deliver him, and bring him to surgery to remove the mass. He will likely need a tracheostomy, a feeding tube, and a possible tracea reconstruction. There will be over 30 doctors and staff in the operating room during my c-section in order to pull off this very complex procedure and give Milo the best chance at success. Even in the best case scenario, Milo is expected to be in the NICU for quite a long time. 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 Milo 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 need to be flown by helicopter to MassGen. There is a risk of fluid causing his lungs to overexpand and his heart to fail which would cause stillbirth. Right now his heart looks great and as far as we know, there is no genetic cause for his condition. This is just a very rare birth defect. Teratomas are a 1 in 40,000 occurrence. Cervical placement of those account for only 3-5% of that number. According to Colorado Childrens Hospital, only 150 cases have ever been reported.

As much as we hate to ask for help, we know that we cannot do this without it. Our parents have been graciously watching our 2yr old son Otto so we can attend appointments together and Silas's work has been kind enough to give him days off with very little notice. Unfortunately, the cost of getting to Boston (gas, tolls, parking) and staying in Boston (hotels, food) is going to add up very quickly. The staff at the hospital could only offer me help with these things if we end up delivering Milo there so we are really scraping our savings to make this work but I have to make sure this baby boy has the best chance at living.

We don't know if Milo 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. Silas, Otto, and I are so grateful for it all.