During the second trimester of pregnancy, we found out baby Benjamin had extra fluid building up in his brain due to his lateral ventricles failing to drain cerebrospinal fluid properly. Lateral ventricles are supposed to measure between 1mm-10mm, and the left ventricle was measuring 11mm. At first, this was mild and just something to keep an eye on. From there, Benjamin’s head was scanned regularly to ensure the ventricles did not become larger than 15mm. Ventricles of this size is considered severe ventriculomegaly, which creates a risk of hydrocephalus and the need to drain the fluid by surgically inserting a shunt into his brain after birth.

By 37 weeks into the pregnancy, both the right and left ventricles were measuring at nearly 40mm and his head was measuring to be greater than the 99th percentile. This is beyond severe ventriculomegaly and great cause for concern. As it grew to

this size, Benjamin was monitored for signs of fetal distress and had an MRI to find the underlying cause of a fluid buildup to this level of severity.

The MRI showed a large mass inside his brain putting pressure on the ventricles. At first, it was unknown what the mass was. It could have been a hemorrhage, missing brain matter, a tumor, or maybe just some odd brain tissue that would go away as he continued developing. We were not able to know more until he was born, so we did everything we could to prepare. Benjamin’s birth was switched to Medical City Dallas so he could be immediately evaluated by a team of specialists including a neurosurgeon. We prayed tirelessly as we braced ourselves for a long NICU stay and some type of brain surgery. He was born via c-section at 38 weeks.

We were devastated to find out after his birth that the mass is a tumor taking up about a third of the left side of his brain. The tumor is currently inoperable as it is extremely large and has its own blood supply, causing a significant risk of him bleeding to his death if removal is attempted. Furthermore, his neurosurgeon was unable to insert a shunt as soon as we had hoped because we did not know if this would spread cancer to his spine. For the first 7 weeks of Benjamin’s life, we did not know anything about the tumor besides its size and location. We needed to find out if the tumor was cancerous, how it would affect his quality of life, if it would spread to other parts of his body, and how (if it all) it could be treated.

Benjamin was admitted to the NICU so he could be monitored for effects. We endured a scary time learning how to take care of our firstborn baby while recovering from a c-section and not knowing what our baby boy’s fate would be. We were told Benjamin would likely be hospitalized for several months and were given a wide range of possibilities for his future - some hopeful and others not so much. We were terrified and heartbroken while also soaking up every beautiful moment we had with our greatest, sweetest, cutest blessing from God.

Benjamin ended up absolutely crushing the odds. His body has adapted miraculously well to his situation and he is currently showing virtually no symptoms. At only 12 days old, he was able to undergo a biopsy where his neurosurgeon removed pieces of the tumor for evaluation. We expected him to need feeding and breathing support for days after this, but he was breathing on his own and demanding milk within a few short hours. He was SO strong and so healthy, we got to take him home the next day!

While we were ecstatic to take our baby home significantly sooner than expected, we remained on edge waiting for the biopsy results and expecting him to be rehospitalized very soon. After 5 weeks of waiting filled with immense amounts of love, joy, and fear we finally got the diagnosis. The tumor is an Infant-Type Hemispheric Glioma. While this is still scary, we are incredibly relieved to find out this type of glioma is highly responsive to a medication that Benjamin can take at home. The medication is intended to shrink the glioma in size until it can be safely removed through surgery. At this time, we are hopeful Benjamin will be completely avoiding chemotherapy and long hospital stays. It is expected that the fluid will drain from his ventricles with no permanent damage as the tumor shrinks - no shunt needed. The tumor has effected his motor development to where he moves the right side of his body more than his left, but this is also expected to improve as the tumor shrinks. There is also no indication of brain damage and his cognitive development is predicted to be unaffected. We are seeing true hope towards him making a full recovery! This cancer is also not hereditary and will not spread outside of his brain. This news is genuinely the best we could have wished for and is beyond what we have been praying for. Besides him getting cancer in the first place, Benjamin has been incredibly lucky.

We do have a long road ahead filled with medications, MRIs, brain surgery, and potentially radiation therapy to prevent re-occurrence. Benjamin will stay on his medication until the tumor can be safely removed, then he will be medicated and monitored for 5 additional years in case the tumor returns. The medication thankfully does not have serious side effects, but will cause a decrease in appetite and make his bones more susceptible to fractures.

We are asking everyone in our lives for ALL the prayers we can get for Benjamins medication to work successfully and for him to be cancer-free for the rest of his life after surgery. We are also needing financial support if possible. While having a baby is already very expensive, it has far surpassed our expectations even with the great insurance plan our family has. We endured unexpected appointments, scans, and emergency hospital visits during pregnancy. We have lost several thousands of dollars in wages from having to take extra time off work. The c-section, NICU stay, and biopsy piled on massive extra bills. In the future we expect many high costs for his medication, surgery, and possibly additional treatment and hopitalizations if his medication does not work as planned. Other expenses such as hotel rooms, gas, meals, and hospital parking compile quickly, and we are also hoping to afford family therapy to cope with and process what we have been through and will continue to endure for the foreseeable future.

Every penny makes a difference for our family. Please share this link and Benjamins story as widely as possible. We are incredibly grateful for all the support we have already gotten from friends, family, and coworkers. We are seeing the impact everyone’s prayers have had on Benjamin as each day he continues to be our perfect little baby boy that is growing up to be big and strong.