Our gorgeous twins, Kate and Ellie, were born on January 5, 2012. They were healthy and brimming with life, despite arriving just a little early at 35 weeks.
During Easter week, when the twins were just 14-weeks old, Ellie came down with what looked like a stomach bug. We took her to the pediatrician. She had no fever and her lungs were clear, so the doctor put her on Pedialyte and sent us home.
The following day, Ellie threw up, then coughed on and off all day and through the night. When I took her back to the pediatrician, her lung capacity was down to 82% of normal. Right away, they put her on oxygen and took us to the local hospital. Ellie’s white blood cell count was very high and the doctors suspected Pertussis (whooping cough). I remember thinking that couldn’t be possible since both girls had already had their first DTaP shot at two-months old. It didn’t occur to me then, but that’s why babies get several shots over time. It’s because the one shot just isn’t enough for a baby to fight off a disease like Pertussis.
On April 13th, Ellie had a nasal cannula tube with oxygen. She coughed non-stop all night. I stayed by her side, putting a pacifier dipped in sugar water in her mouth to try to make her more comfortable. She struggled to breathe and was clearly exhausted from coughing.
The next morning even the doctor was worried about her breathing. Things spiraled downhill pretty fast. Within minutes of the doctor calling for transport to Boston Children’s Hospital, teams of doctors swarmed the room and intubated my baby girl. An ambulance rushed us to the new hospital. My husband’s aunt had to come to stay with my older son and daughter, and Ellie’s twin, Kate. It all happened so fast, I felt like I was in shock.
Sunday Morning April 15, the doctors told us Ellie’s lungs were failing fast, her heart rate was dangerously high, and the fluids that she was getting through her IV weren’t getting to her organs. Whatever was attacking Ellie made every cell in her body “leaky.” They moved Ellie to the ICU.
By Sunday evening the medical team told us that Ellie was in complete respiratory failure
and our last chance of survival was to try a heart lung bypass machine called ECMO. Ellie’s lungs were bypassed, but as the hours passed, Ellie’s blood flow turned to sludge. Her kidney and liver function had virtually stopped.
At 4:30am Tuesday morning, the doctors explained that they now also needed to bypass Ellie’s heart. And to do this, they had to briefly take her off the ECMO machine even though her lungs were completely failed. I kept wondering how much more her little body could take. I kissed her before the procedure. Her skin was stretched taut from being so swollen. Her body was the size of a two year old. I thought I was saying goodbye.
We waited in agony for news on the surgery. Somehow my little Ellie survived the procedure. The ECMO had taken over for both her heart and lungs.
That evening, the doctors told us Ellie’s condition was stable. But the situation was still pretty dire. Four of Ellie’s organs had failed. But finally, we had a tiny glimmer of hope.
Wednesday, the doctors performed a full body exchange of Ellie’s blood. They basically drew out her blood and replaced it with new blood. They were trying to reduce the colossal amount of white blood cells that had invaded her body. Miraculously, over the next days, her kidneys and liver began working again.
They kept taking x-rays of Ellie’s lungs. The image was always the same: complete respiratory failure. They also suctioned her little lungs every day, taking out a horrible, thick brown mucus. The doctors weren’t sure if she would ever be healthy enough to come off of the ECMO.
We finally learned Ellie tested positive for Pertussis. We couldn’t believe it. How could Pertussis do SO MUCH damage and destruction??
There were so many days at Ellie’s bedside feeling completely useless. I worried that my baby could die at any moment, and wondered what her quality of life would be like if she survived this horrible ordeal. I remember telling another mom whose child was in the ICU that my daughter was on life support because of Pertussis. She said, “Pertussis? Who gets Pertussis nowadays?”
A week later, we learned that Ellie had suffered a stroke! It was a devastating setback but we didn’t give up hope. Even so, the limbo was a living hell.
After 25 days on the ECMO, the doctors tested Ellie’s lung function. She did well enough to move to a regular ventilator with continued daily suctioning. Our glimmer of hope increased.
On June 8, Ellie was finally discharged for rehab at Franciscan Hospital for Children. After months of intubation, she had to re-learn how to take her bottle. She needed many hours of physical and occupational therapy.
Ellie’s lungs continued to recover and she was discharged from rehab after about 6 weeks. My little fighter continues to get weekly OT and PT, but thankfully she’s doing quite well. Her sister is thrilled to have her back home again! Ellie survived because of the extraordinary efforts of doctors, nurses, surgeons, and respiratory specialists.
Before living through this, I would honestly never have believed how bad Pertussis can be. For most of the journey, it looked like Ellie would not survive. We still have no idea where she got it. Pertussis changed Ellie’s life and our lives forever. If there is anyone reading this now that might doubt the importance of vaccinations for infants and adults, hopefully my story will change your mind.
Learn more about pertussis.
Thanks to everyone for sharing Ellie’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.
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