Sebanna’s Story – By Lucy DeMille

All that I ever REALLY wanted to do was be a mother. I felt it was my life’s calling.

I was an excited, healthy, 17 year old wife of a military man and mother to two step children when I first got pregnant with Sebastian. Losing him late in my pregnancy due to Preeclampsia was devastating.

So when I became pregnant with Sebanna one year later, I stayed ever vigilant to ensure she arrived safely. All the efforts paid off and I delivered my beautiful 6 lb 7 oz baby girl. When they placed Sebanna on my chest, tears of joy, relief, and utter disbelief at her beauty ran down my face. As she looked up into my eyes, the dark that had been covering me since Sebastian’s death lifted. I knew she had made it into this world safely and things would now be ok. I loved her with every molecule of my being.

Sebanna spent her first 24 hours held in either my arms or cradled on her dad’s chest sleeping. With her tiny head snuggled against me, her small fingers would grip mine. They were some of the best hours of my entire life.

Deployment

Much to my family’s sadness, my husband had to deploy to Iraq less than 30 hours after our daughter was born. I stood in the living room in the early morning hours cradling Sebanna. Her dad kissed her, told her he loved her, and would see her again soon. Tears slipped out, but I looked down at this little baby girl that filled my life with purpose and knew we could do it.

I undertook the task of caring for Sebanna and my two older children with joy and pride. As a new and protective mom I was ever careful. I did not want sick people around her, insisted on proper hand-washing, and maintained a diligent eye.

In life, things slip in and by without us ever realizing their full potential impact. For us, it likely started when a relative stayed at our house for a few days. She had a bad cough that had been diagnosed as non-contagious. Still, I was worried and tried to keep her away from Sebanna. I believe our guest actually had contracted whooping cough from a friend’s unvaccinated child.

The Cough

I first noticed that Sebanna had a little cough and wheezing, plus a rash. I took her into the doctor. Despite Sebanna’s cough and wheezing, we reluctantly were sent home. I watched Sebanna closely attempting to convince myself I was simply being paranoid.

Two days later, she hadn’t improved, and had started having severe vomiting episodes, which scared me badly. This time I took her straight to the hospital. They did some tests, but again sent us home. After another two days later, things were still not improving. Sebanna worsened overnight, and had her first mini blue spell. Feeling desperate, I took her back to the ER. I was determined to get her the care she needed.

They swabbed her for RSV and said she tested positive (much later this was shown to be a false positive). As we sat there and waited for them to decide on her care, I wrapped her in a blanket and held her. Though scared, I felt some relief that she was getting medical help and hoped she was finally going to be ok.

Dehydration

The admitting Dr. felt that Sebanna was dehydrated and would probably only need to stay overnight. They made multiple attempts to draw blood from her and could not get an IV started. Watching them try and fail, I cried almost as much as my precious baby girl.

By the time Sebanna’s Dr. came, she still was not able to eat and her coughing spells were getting worse. A friend suggested I try a breast pump so I could try to bottle feed. But even bottle feeding didn’t work. Sebanna would cough so much, she couldn’t catch her breath and would start turning blue.

The hospital didn’t have a pediatric ward, so they put her in the surgery ward. Her oxygen consisted of a paper cup with tubing taped to it. They just weren’t equipped for babies. I was terrified; it seemed unreal. We needed to get her to a pediatric hospital.

Transferred

Sebanna’s blue spells were getting more frequent, lasting longer, and it was harder to get her oxygen levels back up. We finally were transferred by ambulance to a hospital with a pediatric ward. It took several pokes, but they eventually got an IV started.

Again, I wondered if I could breathe a small sigh of relief. I hoped everything would now be ok. But still, I stayed in the room with her the entire time, going out only to put breast milk in the fridge. I was terrified for her to be alone. They had a tent in her crib to help with her breathing. It was cold in the tent so I would put her little hat on her and cover her trying to keep her comfortable. I spent most of the time standing beside the crib holding her tiny hand.

Seizures begin

Sebanna began shaking, balling up her fists, with her eyes rolling back. The nurses had said that it was a seizure. It lasted about 25 mins. I held her in the rocking chair and cried. I did not understand why things were worsening.

We took her for a CAT scan. She lay in my arms, so tiny, with a pediatric oxygen mask on her face which was still too big. Just as they finished the scan, she had another horrible episode. I felt so helpless as she struggled. I prayed she knew how much I loved her and worried that she always know I was there.

They didn’t have a pediatric intensive care unit, so we needed to transfer to a new hospital. I gathered our things. But since we had to be airlifted there were weight restrictions. I volunteered to leave our stuff behind so I could go with her.

We were taken via ambulance, then plane, then ambulance to the third and what would be the final hospital. I was alone, with no one to help me advocate, in a big city. I had never been so scared, tired and worried.

The previous hospital had mentioned the possibility of Pertussis (Whooping Cough) just before our transfer. This new hospital said they would test her.

The day after she was admitted, she had a severe blue spell. She ended up being bag masked ventilated. The nurses were telling me that she was “doing ok.” Oh, I wish that is how our story went. Watching my baby not be able to breathe, intubated, seeing her swell and become cold was beyond physical torture. I gladly would have taken every ounce of her suffering if I could have.

Red Cross couldn’t bring Samuel home

At this point we had sent several Red Cross messages to get my husband home; although the Dr. was saying it was not life threatening. But, the military didn’t grant him leave.

The nurse sponge bathed Sebanna. Even ventilated, she had coughing fits. They started pulling a lot of blood up when they would suction her lungs. It had my heart shaking in fear. They said she would need to be transferred to Portland for a double volume exchange transfusion. We never had the time.

The last thing I got to do for my baby girl was when I put socks on her hands and feet. Her hands and feet were limp, ice cold and turning purple.

Acceptance, NO!

They made an incision to drain her lung. I remember the clanking of the metal scissors being thrown in the sink after they had been used to cut my tiny baby. They said the IV line was sending all the fluid to her lungs.

The Dr. told me they could do no more. I remember my screams and pleading to save her. My mind shut down. A rocking chair was bought in. I simply sat, and rocked my baby girl and prayed for this nightmare to end. My baby girl, my sunshine, this beautiful angel who had changed my life was gone. I could not believe nor accept it.

I was stuck in a room cradling my baby girl with the mind ripping realization trying to break through that this would be my last chance to hold her. The pain seared through me worse than anything I could ever describe.
I cried myself into coughing fits from the Whooping Cough now surging through my own body, with a swollen chest that I refused to pump. It took my air. I felt I had failed my baby girl, that I should have been able to save her.

Whooping Cough doesn’t care how much you love your child, or how good of a parent you are. It simply ravages through and destroys, leaving lifelong scars behind.

Honoring Sebanna
In memory of Sebanna, we are trying to advocate for more pertussis awareness. To learn more click here.

Learn more about pertussis.

Thanks to everyone for sharing Sebanna’s Story. You are helping to raise awareness and make a difference. If you would like to comment or offer support to the family, please visit Shot by Shot on Facebook.