This is my story about loving and losing my fourth grandchild, Saylor Irene. Saylor was the precious first born of our daughter, Betsy and her husband, Evan. We are blessed to live about five minutes from Betsy, Evan and Saylor. I am a former NICU nurse and have been a pediatric RN for 42 years. As a result, I was able to help them with her care and hopefully provide some reassurance and support during sweet Saylor’s short life and since.
During the 20-week anatomy scan, our worlds were turned upside down and we started our sad but sacred journey with Saylor. Betsy and Evan were told their baby had some possible abnormalities, but it wasn’t until the amniocentesis results were returned that we were told the absolutely terrible news that Saylor had two major and rare chromosomal abnormalities, Krabbe Disease and Deletion of the First Chromosome. The doctors told us she was likely the only baby on the planet with both of these disorders and they had no idea what the outcome would be. The very best scenario was Saylor would live to be two. And the doctors did not know if Saylor would die in utero, at delivery or shortly after birth.
Betsy had wonderful care through a Perinatologist who follows high risk pregnancies. We were pleasantly surprised (thrilled would be a better word) when Saylor was vaginally delivered at 37 weeks and had Apgars of 8 and 9, indicating a healthier baby than we were expecting. She spent 8 days in the NICU and then was released home to her adoring parents.
Dr. Escolar from Pittsburgh Children’s Hospital called and asked us to bring Saylor for an evaluation regarding a stem cell transplant, which is providing hopeful treatment for children with Krabbe. We were heartbroken when we were told there was nothing they could do for her, because even at 3 weeks her nervous system was already under attack. We are convinced the combination of the two chromosomal issues made her a very sick baby.
So our life began loving Saylor at home, while we prayed for healing. We are strong believers in Jesus Christ and knew He was more than capable of healing her. When she died at three and a half months we were heartbroken but also rejoiced that Saylor was healthy and living with her Creator.
Losing a grandchild is devastating! I was not prepared for the agony of watching Saylor’s parents cope with their loss. They were told that they could not just try again, as future children would likely be affected by one or both of these conditions.
If you are experiencing this rollercoaster of emotions with a Krabbe child, or any terminally ill grandchild, I want you to know you can survive. It won’t be easy and you will always have a broken heart, but there is healing. I called Saylor my Sunrise Baby as I often took the early morning shift which included tube feedings, apnea monitor, and eventually oxygen. Now every pink sunrise I see reminds me that Saylor will always be in my heart and that I WILL see her again in heaven.
The things I continue to do on my healing journey include prayer, praise music, Christian counseling, journaling and exercise. I share with others who have lost babies and KrabbeConnect became a huge support. I found if I stayed close to the Lord and fellow believers it was easier to rest in the knowledge that Jesus has this all worked out. Just like the airplane illustration of putting on your own oxygen mask first, you need to care for yourself so that you can care for your heartbroken kids. Saylor is living her best eternity with Jesus. I hope that you can meet her someday. I look forward to being reunited with my Sunrise Baby and my Savior.