Help for baby Ren

Ren Chrisroper Ross, born on November 27th 2021, has proved to be a true blessing to our family. Jordan and Tara Ross happily welcomed their newest addition and Augustine was finally the big sister she hoped to be. Ren came into this world ready to be loved and his family has been prepared to do whatever it takes to nurture him. His doctors have noted that he is a strong and happy baby, but there were a few things they needed to discuss. His family was assured that he could continue to be a healthy baby but the road ahead has foreseeable obstacles that need immediate actions to overcome. Our little buddy has received the diagnosis of having  Sagittal Craniosynostosis.

 

It has been decided that surgery to fix the shape of his skull is necessary, hopefully as soon as April of this year. Most surgerys of this nature are considered high risk due to the closeness to his brain and the amount of blood that can be lost so quickly. The extent of the surgery is determined by the amount of skull that must be removed, adjusted, and reset. We are still waiting for further tests to confirm the full extent of his operation.

 

Craniosynostosis is described as a congenital deformity of the infant skull that occurs when the fibrous joints between the bones of the skull fuse closed prematurely. Due to this closure, the baby develops an abnormally shaped skull because the bones do not expand normally with the growth of the brain. In some cases, the growth of the skull is restricted enough to cause increased pressure and if left untreated this deformity will eventually lead to severe pain, seizures, blindness, brain damage, and even death in some cases. This is a life saving surgery - not elective.

 

In the case of Ren, his little head has good structure and he has strong facial symmetry. He is not currently showing signs of pain due to the pressure of his growing brain. His eyesight appears to be unbothered and right on par with where he should be. These are all good signs but his medical team all agree that surgery is needed and that it should happen soon while he is young and the bones are still able to heal quickly. The ideal time for this operation is before he hits 6 months. He is a strong baby and has shown doctors that he is healthy and ready to handle this procedure. Despite the severity and length of the surgery this is an issue that modern medicine has been able to fix often and with great success.

 

In every story there is the good and the bad. In Ren’s story the good thing is that we are excited to say that the chances of Ren having a great surgery and a perfect recovery are very high. The bad, unfortunately, is a very human but humbling problem - money. Maternity leave has already been used up, FMLA has time constraints, and work benefits available for helping a family in this situation are limited. He will require time in the ICU and then time in the hospital for monitored recovery. He will have months and months of at-home recovery as well. Time and Money will quickly become a struggle as they move into a single parent income for a minimum of 3 months upwards to year depending on the outcome of surgery. The initial deductibles and tests have already become enough to upset their yearly budget. The road after surgery will be the hardest. The uncertainty of how fast he can heal, the uncertainty of making a living for your family when Ren will require lots of attention and aftercare. This means that one parent will be required to set their career to the side and simply be there for him as he recovers. The insurance will only pay for a portion of the six figure sum the surgeries will cost. Ren’s parents will still be responsible for paying a very large debt after insurance and there are still all of the follow up visits, treatments, and even corrective helmets that will be required for the next year or so. The road ahead may be long but it is worth it because life is worth fighting for.

 

We thank everyone for their time in simply reading and learning about Craniosynostosis and allowing us to bring awareness to the issue. We hope next time you see a young child with a scar from ear to ear, that you understand what they have already been through to simply be alive. We deeply appreciate your continued prayers and thoughts, without faith none of this is possible. We humbly ask for your help through donations. If we are able to help Ren and his family out in the slightest then we feel we are doing the right thing - Allowing them to focus on their child without the financial weight tearing them down every day is the ultimate goal.