By Sam Spencer
Mommy to Kaysen
Follow Kaysen’s Journey
In May of 2021 we found out we were expecting our rainbow baby. The pregnancy was rough, but we were ecstatic.
On January 6th 2021, our beautiful Kaysen was born via c-section after I had a lot of trouble with my blood pressure and they thought he may of had fluid around his heart and abdomen. I began having extreme itching and my kidneys were suffering. I remember looking at him in awe of just how precious and beautiful his skin was. He had been born with very sharp odd shaped yellow fingernails, and a sore on his wrist that we were assured was just a suckling spot. Everything was perfect.
Kaysen was born a little early so he needed a preemie car bed, but that was okay. While his dad and someone from the hospital were installing his seat, I was beginning to pack up to go home. Everything was set to go. I began to change Kaysen’s diaper and noticed he had developed large yellow fluid filled blisters all along his bottom. Alarmed that I may have used a diaper, cream, or wipes that didn’t agree with him, I called the nurse.
We quickly noticed from the expression she made something wasn’t right. She called up a doctor who took Kaysen and wheeled him down to the NICU. From there he had a spinal tap, blood work and biopsies done from the fluid in the blisters.
Throughout our waiting period for results, Kaysen’s skin began blistering in other areas; anywhere he was touched or rubbed developed blisters. He was given two antibiotics and antivirals to try and help. But after a week, all the tests came back and all were normal. Nothing showed up. Our baby’s condition was a mystery. Something they had never seen before.
Meanwhile, our sweet boy’s skin still deteriorated. Kaysen was airlifted after a week in our local NICU to Cardinal Glennon in St. Louis where they knew immediately what was going on. Our son was diagnosed with Epidermolysis Bullosa, which is a chronic, lifelong, painful condition that made his sweet skin as fragile as butterfly wings. There is no cure, there is no treatment other than managing symptoms.
The rest of his stay in St. Louis was a blur and terrifying as we came to terms with the fact that this was our reality. The hospital took good care of us and taught how to handle our son, how to care for his wounds, and how to manage his pain. They got us set up with a wonderful specialist who is familiar with the condition. We thought then that it was going to be okay. We were going to be okay.
Kaysen’s specialist was quick to get us set up with genetic testing to figure out what form of Epidermolysis Bullosa our son had. We hoped Kaysen had the mildest form, that he would grow to do extraordinary things in his life no matter the circumstances.
Unfortunately, the results brought us to our knees. Our son has the worst and rarest possible form there is: Junctional Epidermolysis Bullosa-Herlitz (JEB-H). This diagnosis changed everything — it meant that our son was terminally ill, with not only extreme fragility externally but internally as well. We were told we only have 4-6 months with him before this disease took our sweet son.
OAW came and took photos for our family when he was three months old, shortly after we found out Kaysen was terminal. We are so thankful we’ll always have those photos to remember. Kaysen’s diagnosis changed everything. He couldn’t play or be held like a normal baby because any friction would tear or blister his fragile skin. Kaysen was offered to be a part of a study trial for a treatment that helps the blistering heal faster, but unfortunately it was not a cure.
We hoped and dreamed for a miracle and a cure to be found. Time was so crucial.
[more below…]
[In late June, Kaysen’s doctors and family determined that in order to give Kaysen the best chance for survival, he would need a g-tube placed. At 5 months old, the lesions in his mouth and throat were making it nearly impossible for him to eat. On Angels’ Wings provided a second set of photos on June 23rd before the family headed to Columbia for the surgery, which was conducted on June 24th. With permission, we are sharing the Facebook posts Mom made during Kaysen’s last days.]
June 24
Kaysen is in PICU.
His surgery started out great, and at the end when they tried to remove the intubation tube his airways started having spasms. His oxygen and heart rate dropped. They had to do 2 minutes of compressions, and redo intubation. They have him heavily sedated and on muscle blockers so he cannot move.
They are asking us to make some heavy decisions in case tonight does not go well. They are worried about secretions in his lungs, swelling and lesions forming on his trachea. and trying to remove the intubation tube and he does the same thing.
This had been a really hard day.
June 25, 11:16AM
We’re scared.
Kaysen is not a good candidate for a trach because he is so small, it would rub badly inside his throat. In the end it would cause him a lot of complications and pain.
They will be taking the intubation tube out in the next few hours. We don’t know how he’ll respond. They said he is showing some promising signs, but unfortunately they cannot guarantee he’ll be okay.
June 25
At 3:46 PM Kaysen flew away.
He did so good, but he was so tired and he was so weak.
We played him his favorite sounds from his favorite elephant toy, and held him and told him how much we loved him. We told him that he was the very best baby and such a good boy. He had all his favorite things. He kicked his little leg till the very end.
He left us peacefully, and shortly after the skies began to cry with us.
We love you so much Kaysen James. So so much. This hurts so much bubby, but you have no more pain.
Fly high my sweetest butterfly.🦋🦋🦋
June 26, 9:39AM
I woke up this morning after a long night of fighting to stay asleep instead of crying, and you’re still gone. I wanted so badly for this to be a dream.
I love you baby. I love you so much.
You’re so perfect. Every single inch of you is perfection. Oh God, I love you.
We’re supposed to be watching Mickey Mouse right now as you grump at me to take your medicine and eat. We had the same routine every day. My heart hurts so much, I feel so broken. I just want you back with me. I miss you unbearably. What am I going to do without you?
Thank you On Angels Wings for taking these for us the day we headed to the hospital, and editing them last night so we could see his face.
June 26, 5:04PM
The funeral home let us hold you one last time today bubby. You looked so handsome. It took a tiny bit of the ache away seeing you look so peaceful. I wanted to hold you forever. I rubbed your little hand and stroked your little hairs and held you so close. I hope you could feel my heart beating wherever you are. Mommy and daddy love you so much.
Yesterday was so hard baby. We held you as your last breath left your body and your heart stopped beating. You were so tired. The nurse helped us give you one last bath and free you from all your bandages once you went to sleep. I’m so glad you’re free.
My heart aches for your big blue eyes to look at me, for your tiny hands to touch my face. I really wish I could’ve heard you laugh at least once.
The tears flow like waves. I miss you so much, and I know that will never go away. You’re such a good baby. The very best boy. Always and forever my sweet butterfly. My last baby.
[Images below taken by On Angels’ Wings on June 23, the day before Kaysen’s surgery.]
