Baby Oscar’s Journey
Oscar Dean Gaul our precious grandson, son to daughter Lily and husband Jared and brother to big sister Arloa has Sagittal Craniosynostosis. Our families lives are about to take a change for the next year and possibly more.
What is Sagittal Craniosynostosis (kray-nee-o-sin-os-TOE-sis).
Oscar was born with a head deformity. We were hoping like many babies born with deformed heads it would go back into its proper shape after a while. Unfortunately it did not and continued to get worse. It’s been a time of the unknowns and what if’s, all the fears that can consume one’s heart and mind. Through it all we haven’t been alone. Our God has been our refuge and strength.
Oscar’s wonderful pediatrician, Dr. Beckman contacted a neurologist at Helen Devos Children’s Hospital in Grand Rapids, MI. He sent him pictures of Oscar. Dr. Casey wanted to see Oscar ASAP. A week later, in a flurry of appointments we saw a neurologist, a plastic surgeon Dr. Casey partners with, an ophthalmologist and a blood management team at Helen DeVos Children’s Hospital. It was a full 24 hours of CT scans, blood work and several more tests. Our darling Oscar was a warrior through it all. Oscar has Scandinavian lineage on Karl’s side. In Scandinavia Oscar means Divine Strength. We know he will be a testimony to his name’s meaning this year.
Sagittal Craniosynostosis is a premature fusion of the sagittal suture that runs from the front to the back at the top of the skull which forces the head to grow long and narrow. Sagittal craniosynostosis is the most common type of Craniosynostosis, although rare. It is a bone issue and not a brain issue at this time, as long as surgery is done.
Surgery and Beyond
Surgery will happen within the next 6 weeks. They will remove a 2 inch wide by 3-4 inch long part of Oscar’s skull. It will start at the top of his head from forehead to the back of skull along with 4 other incisions to allow the brain to grow and the skull to expand with it.
Little baby Oscar’s bones will regrow allowing the brain to grow without pressure from the unmoving skull. He will have to wear a helmet for a minimum of 6-8 months to reshape head.
We are praising God that early detection was found and Oscar should make a full recovery.
How You Can Help
Spiritual and Emotional Support
Please pray for wisdom for the doctors and their safety. Oscar’s blood clotting levels need to remain high so he doesn’t need a blood transfusion. Oscar must be in excellent health and he’s been sick on and off for 6 weeks. Please pray he remains healthy so there are no delays. Although infections or other complications are rare please pray during the first 24 hours in ICU Oscar progresses on schedule.
Prayers for peace that transcends all understanding for Mom, Dad, Arloa and our families. Arloa, Oscar’s big sister is a very intuitive and sensitive child. She will carry her brother’s sufferings on her shoulders and in her heart. Pray for calm and positive spirits for mom, dad and the rest of us so Arloa is ensured it is well, it is well with our souls and her baby brother.
Oscar, Lily and Jared will be traveling to Grand Rapids from the Upper Peninsula many times in the next year. Pre op visits, surgery and post op visits. Check ups and new helmets as he grows will keep them crossing the Mighty Mackinac Bridge aplenty. After this year or two with no complications then only once a year visits. The neurologist said they will see him annually until he goes off to college. Please keep their safety in your prayers.
Thankful Lily and Jared have insurance through Obama Care. Although a $6,000 deductible must be paid this year and next year first before insurance kicks in.
Medical travel expenses for the next year and beyond will also add to our children’s financial burdens.
There is always always always something to be thankful for. We are so thankful for you, our friends and family. It is your acts of service, words of comfort, gifts and prayers that keep us keepin on. For early intervention for Oscar. For a great team of doctors and Helen DeVos Children’s Hospital. For our sons and their amazing wives who will support Lily and Jared by helping care for Arloa back at home and housing while in Grand Rapids and so much more. For our Lord, Jesus. We can do all things through Him. We have JOY, because we are thankful for HIS never ending presence, love and wisdom.
Donations will be deposited into Lily and Jared’s Health Savings Account. A HSA is a a savings account used in conjunction with a high-deductible health insurance policy that allows users to save money tax-free against medical expenses. Once the max is reached for their HSA this year remaining funds will be used for travel expenses and 2019 HSA.