Haley’s Story of Hope

On March 4, 2018, our beautiful daughter, Scarlett Kay Raymond, entered this world as a healthy, full term baby. My husband, Seth, and I were so excited to meet our sweet girl, take her home, and start our lives as a family of three. We had spent the last nine months dreaming up all of the adventures we had ahead of us. We couldn’t wait to take her on a walk in the stroller with our dog, Pepper. We pictured many story times and movie nights. We thought about the hard conversations we would have with her as she grew up and the trips we could take with her, and imagined her wedding day. We had planned so much. But God’s plan was different than ours.  

When she was four days old, I ended up in the emergency room with major chills, a fever, and pain. After many tests, we found out I had a really bad UTI, which ended up in my blood stream—E. Coli Septicemia. I was hospitalized for what they told me could be two to four days. My husband went back and forth from the hospital to checking on Scarlett, while other family members stepped in and help take care of her as well.

On the morning of March 10, my parents were watching Scarlett, and I FaceTimed them, hysterical, telling them I desperately needed to be with my baby girl. We made arrangements with the hospital, and they agreed that it would be okay for her to come see me. We got the room all cleaned, and I went to take a shower. In the middle of my shower, Seth came in and said, “Haley, I need to talk to you, your mom just called.” From that moment forward everything changed.

“Everything is okay, but Scarlett stopped breathing. Your mom gave her CPR and she started breathing again. EMT came and checked her vitals, and they said that she was okay, but I wanted you to know.” I lost it—completely lost it. “This can’t be normal,” I thought.

After that phone call, the doctor came in and said I would be released that day. I told her about the phone call I had just received, and she rushed my discharge papers. In the midst of this happening, we received another phone call that Scarlett stopped breathing again, but after my dad patted her on the back, she caught her breath. I told my parents to bring her to the ER immediately. About the time my parents arrived, I was discharged and ran to meet Scarlett in the ER.

Not knowing what to do, I thought maybe she just needed her mom and I should try feeding her. Everyone left the room, except Seth, and I tried to feed her. In my arms, she did it again. The image will never be erased from my mind—a blue face, pale, gray lips, her eyes sunk in. I immediately screamed for help, and my daughter was ripped out of my arms while the nurses and doctors did CPR on my 6-day-old baby. They called Cook Children’s Hospital, knowing that this issue was far more than they could take on. Scarlett was moved to a different, larger room, with much more equipment while we waited for her to be transferred. When the transfer team arrived, Scarlett had about five more of those episodes. They recognized that she was having major seizures, medicated her, and after several hours, finally were able to intubate her. 

We made it to Cook Children’s, where many tests and scans were performed. We quickly found out that Scarlett also had contracted a UTI with E. Coli, which went to her bloodstream. The doctors assumed that she also had Bacterial Meningitis, and when the tests came back it was confirmed.

The doctors and nurses spent many weeks telling us the possible outcomes—bad vision, hearing problems, cerebral palsy, shortened life. During all of these conversations we were aware that for one, she shouldn’t be alive, and secondly, God can do major miracles.

Scarlett spent 60 days in the NICU and had three brain surgeries during that time. We spent every night at the NICU reading Psalm 46 over her with a focus on verse 5, “God is within her, she will not fall. God will help her at break of day.” We prayed, begged, and pleaded for a miracle. With every brain scan, her brain looked different. The surgery seemed to help. We were discharged from the NICU knowing that we had a long road ahead of us. We thought that long road meant giving daily seizure meds, a lot of physical and occupational therapy, and worse case, cerebral palsy. We planned what our new life would look like with a special needs child. But as I said before, God’s plan was different.

Ten days after bringing her home, Scarlett started to decline again. After a rough night with lots of vomiting, we rushed back to the ER at Cook Children’s. Scarlett was scheduled for her fourth brain surgery a few days later, but the doctor ended up doing an “emergency” surgery the morning after we brought her into the ER. Scans were done on her brain, and she had developed many cysts—too many for anyone to count. The conversations with the doctors started to look a lot different after this surgery.

We had what is called a Cares Meeting, where everyone majorly involved with Scarlett’s life and health met to discuss what the next step would be, surgery after surgery for the rest of her life, or comfort care with a shortened life. After a lot of prayer leading up to this meeting, hearing all opinions, and a lot of prayer afterwards, it was decided that we would take Scarlett home on hospice to seek comfort, all while still praying for a miracle. We knew that God was capable of a miracle for her, and He had already performed many miracles over her life. We knew that He could completely heal her brain and allow her more time on earth, but we also realized, that earthly healing may not be His will.

We took Scarlett home, and enjoyed every moment with her. We made a bucket list and went on many adventures—staying in a hotel, going to a Texas Rangers game, tasting Starbucks, watching Star Wars, going to the zoo, and so much more!

While we loved every moment with her, it was also so hard watching her suffer, knowing that she was in so much pain, and worse, knowing that feeding her, was becoming painful for her. We continued to love on her and provide as much comfort as possible, but after 148 days of life, Scarlett took her last breath.

It wasn’t fair. Why did this happen to our beautiful, perfect daughter? It didn’t make sense. And honestly, it still doesn’t make sense. But, that doesn’t change God’s goodness. He gave us so much comfort and peace during those hard days as we watched her suffer, and He continues to give us peace today. It was a constant battle between wanting her to be free from all her pain, and selfishly, not wanting to let her go. We wanted a miracle so badly for her. We wanted to wake up one day and see brightness in her eyes and know that she was completely healed. But, most importantly, we wanted God’s will—and God’s will doesn’t always line up with our plan. His will doesn’t always mean healing on earth. We have to trust that no matter what His will is, He is in control, and has a plan for our lives.

For Scarlett’s life, He planned 148 days. God is not an evil God, but He did allow her illness. Because of the evil in the world, terrible things happen, like parents outliving their children. But God can still use that for His glory. He has already used Scarlett’s story for His glory in so many ways. We have heard many stories of people learning to pray and trust God even in the hard times, people coming to know the Lord as their Savior, and people choosing to keep fighting because of Scarlett… and those are only the stories we know of.

We may have planned our “perfect” lives with Scarlett. We thought we knew what life would look like with her, but God’s plan was much different. I think about Scarlett everyday, I dream of holding her in my arms again, and my heart aches for her so much. The pain I feel without her is indescribable. But, I have a hope in Christ—a hope that tells me I will be reunited with my daughter again in Heaven—and this brings me so much peace. God’s plan may have been different than my “perfect” plan, but I trust that God’s plan is much greater than I can imagine.

Soon after being born, our sweet Scarlett Kay became very ill with bacterial meningitis. She fought hard on this earth for 148 days, until our Savior decided to call her to her heavenly home. The pain we feel without her is great, but the hope we have in Christ is so much greater. God has used Scarlett to change our lives, and the lives of many others.

We would be honored to share your story as a Hope Mom on our blog. On Saturdays we feature Hope Moms’ stories in order to showcase God’s faithfulness even in the midst of such deep sorrow. If you would like to have your story shared on our blog for this purpose, learn more and submit here.