Have you ever had a day that was filled with grief and joy all in the same day?
Recently I had not just one such day, but two in the same week.
On Saturday February 11, 2023 we had a memorial service for our 8th grandchild who was only 14 hours old when he went to be with the Lord. This day was filled with grieving but also a joy knowing that Reese Edward was with the Lord. He was no longer blind. He was no longer brain dead. He was alive and whole. Even though this seemed to be a finale, it was just the beginning of a whole new season. To fully understand this, I need to go back to a doctor’s appointment when my daughter was 20 weeks pregnant.
During this scheduled ultrasound it was detected that Baby O (this was his name to everyone) had what seemed to be fluid on the brain. Because of this detection my daughter was transferred to a high risk doctor at Tennessee Maternal Fetal Medicine.
At 23 weeks an amniocentesis was performed and the fluid on the brain was confirmed as hydrocephalus. We were ecstatic to have a diagnosis and a plan of action. Deliver the baby via C-section and have a brain surgeon on standby for emergency surgery to insert a shunt in Baby O to relieve the pressure. And besides the club foot they had also found, which again would be taken care of after birth to correct, Baby O would lead a normal life.
However, during continued doctors appointments, it became apparent that Baby O would need to be under the care of a hospital and a team of doctors equipped to handle the unknown, so their care was transferred to Vanderbilt. It was here that another ultrasound, at 32 weeks, confirmed it was in fact NOT hydrocephalus, but it was a combination of things and no one had a name for it.
If you looked at the list that was on my daughters patient portal and googled them, you came up with most of the items pointed to Dandy- Walker Syndrome. In researching we knew people who had full lives, they were special needs, but it wasn’t life threatening. The team didn’t want to speculate so a Fetal MRI was scheduled. The earliest they could get her in was January 19th, 2023.
On January 21, 2023 the outcome was listed on my daughter’s patient portal and it didn’t sound good. I am not a doctor but I knew based upon googling the items our outlook had just been altered. The list actually ended up being looked at by a nurse and her response was “has anyone mentioned ‘heroic life saving measures’?”
These words started messages being left for someone to return a call to explain what was going on. The call finally came and another “team meeting” was called for January 30, 2023.
At 38 weeks, my daughter was hooked up to machines to monitor the baby’s heartbeat which was normal and strong and another ultrasound had just been completed. The doctors made their way into her room to discuss the findings of the ultrasound which just confirmed the Fetal MRI. She and her husband would need to start making decisions. Baby O had no brain activity and would only live with medical intervention for the rest of his life, however long that was.
They made the decision of a DNR and to allow God to work in whatever way He chose. The C-section was scheduled for the following Monday at 8am and Baby O was given little chance of ever taking a breath.
During the final week before baby O a diagnosis would finally be given. At one of the many doctors appointments they were able to take DNA from both mom and dad, and they still had liquid left from the amniocentesis. It was sent to Columbia University for research and on Wednesday February 1, 2023 they called and told us that Baby O had Walker Warburg syndrome which is a very rare condition of Muscular Dystrophy and that he had an extreme case. It was reiterated again he would most likely never take a breath.
But God….
On February 6th at 8:38 am Reese Edward was born. He not only took a breath but he kept breathing for almost exactly 14 hours before he passed into the arms of Jesus where he is happy and whole.
