Eleanor (Ellie) Jean Sitzmann was born on July 5, 2019 at 4:28 AM at MercyOne Medical Center in Waterloo, IA. She weighed 6 lbs 13 oz. She had a normal, healthy delivery and I had a normal healthy labor. We stayed in the hospital for 2 days and brought her home on July 8. We made so many memories with our family of 4 in that short time and got to experience life with 2 kids. We were just starting to get the hang of it.
On Sunday, July 14 at approximately 10:00 AM, we noticed that Ellie was refusing to eat. She would put the bottle in her mouth but just sit there with it and not drink; she also kept falling asleep. Having already had raised a newborn before, we chalked this up to the typical newborn sleepiness and just put her back in her bassinet to sleep for awhile. Before long, it had been almost 5 hours since she had eaten anything and I was starting to get concerned. We noticed that as she was sleeping in her bassinet, she would make very strange grunting sounds and to us, we just assumed she was fussy and wanted to be held but didn't think anything further than that. By 4:00 PM, she still had eaten nothing. It was at that time that I called the "nurse on call" and asked what we should do. Based on her symptoms, the nurse told us to bring her to a walk-in clinic to be looked at. While on the phone with the nurse, we noticed while holding Ellie that her fingernails were beginning to turn a bluish-grey color and the sockets of her eyes were also turning this color. I put her in the car and my husband stayed home with our 2 year old son, Emmett. I told him I would be right back. I had no idea how wrong I was.
I began driving Ellie to urgent care and on the way there, she began projectile vomiting profusely. This was so scary for me; I pulled over on the side of the road to be sure she was okay. She was, so I kept going. When we got there, a doctor looked her over and I could tell immediately that he was very concerned. Ellie's oxygen level was dramatically low and she needed oxygen immediately. He determined that an ambulance to the emergency room was the best course of action for her at the time. I was told that I could not ride in the ambulance with her, but that they were going to MercyOne and would be driving very fast. I drove as fast as I could to meet them there.
When I got there, I noticed that they had not yet arrived and I thought this was strange. I went to the desk to check in and a social worker took me into a private room where another family was waiting; she asked them to leave and sat me down at the table. I asked if Ellie had arrived yet and she informed me that the ambulance crew radioed to them and said that Ellie had briefly stopped breathing in the ambulance and that the first responders had to begin chest compressions to get her breathing again. I called my husband to tell him what had happened and he put Emmett in the car and they came straight to the ER. I also called my mom to see if she could come up to take Emmett home to our house and stay with him. When Eric arrived, the ER doctor came to get us and took us back to see Ellie. She was awake, but was very sedated. They chose at that time to intubate her to help her breathe easier. We met with Dr. Davidson, a pediatrician at MercyOne who explained to us the seriousness of the situation. Prior to all of this, our son Emmett (2) contracted a case of croup and went to the emergency room himself where the ER doctor also did a viral panel and he tested positive for a virus called Enterovirus. The ER doctor explained to us that it is essentially a summer cold and to treat it symptomatically as there is no "cure" or medication to reverse or lessen the effects. We explained this information to Dr. Davidson, who told us that there were a great deal of cases of Enterovirus circulating around the Cedar Valley that he had seen recently. Although at the time they did not know what exactly was causing all of this for Ellie, Dr. Davidson painted a very clear picture for us. I will NEVER forget his words. He looked us both in the eyes and said "This is a very sick child. Something very bad could very well happen." It was at that exact moment we realized that our daughter was now fighting for her life. He then told us he felt it was imperative that she be transferred by helicopter to Stead Family Children's Hospital in Iowa City immediately as her condition was far more serious than everyone originally thought.
The flight crew from Air Care in Iowa City arrived at MercyOne to transfer Ellie to Iowa City. We watched them transfer all of her lines over to their equipment and take her up to the helicopter. They informed us that we should go ahead and start our drive because it would take us a lot longer to get there than they would. We left and began our hour and a half trek to Iowa City. About 20 minutes into our drive, MercyOne called us and asked us to turn around because Ellie's condition had worsened-- that is all she would tell us. We sped back to MercyOne and found out that her breathing tube had become dislodged so they just needed to replace it. This time, we went up to the helipad with the crew and watched them load Ellie into the helicopter and watched them take off. We then got back in our car and went to Iowa City.
About 20 minutes outside of Iowa City, a social worker from the ER department at UIHC called us and informed us that Ellie had "coded" (stopped breathing) in the helicopter about 10 minutes prior to landing. Once again, the flight nurses began chest compressions to start her breathing again. This time however, they had been doing them for over 20 minutes and had no luck. When they finally had success resuscitating Ellie, she told us and said she would be sent upstairs to the 3rd floor-- the PICU.
When we arrived, we went up to the 3rd floor and had to wait in a separate area for a doctor to come and tell us we could go see Ellie. A fellow finally came to talk to us. He told us that because Ellie's brain, blood and vital organs had gone without oxygen for more than 20 minutes that she was in extremely critical condition. She had developed a condition called acidosis in her blood due to lack of oxygen which creates toxins in the blood that cause significant damage to vital organs such as the liver, kidneys and intestines. Her lactic acid levels were above 30-- a healthy person has a lactic acid level of less than 2. He painted a very clear picture for us-- Ellie's prognosis was not good.
We were finally able to go see her in her room-- Room 311. She was hooked up to as many things as you could possibly imagine to monitor the function of her vital organs. We gave the doctors as much information as possible and mentioned that her older brother had come down with Enterovirus only a week prior to this-- however, no one seemed to be overly concerned about this fact as they all thought this was caused by something bigger (genetic metabolic disorder or bacterial infection). But they did choose to do a viral panel to see if it was possible that she had Enterovirus or any other virus. At this point, Ellie had become septic as well.
I will never forget the next morning. We were forced to make a decision that no parent should ever have to make. We met with a team of doctors, palliative care, surgeons and fellows who wanted to make sure we had a clear understanding of exactly what was happening to our daughter and what the likely outcome would be. Due to lack of oxygen for so long, the chance of Ellie ever regaining normal neurological function was less than 10%. With a procedure known as ECMO, that chance would only increase to about 30%, at best. Ellie's poor little body had already sustained so much damage that all the doctors made sure we were aware she was not a good candidate for the ECMO procedure, but they left the decision in our hands. If we chose not to proceed with ECMO, all we would be able to do was provide her with comfort and care for the remainder of her time. If we chose to do the ECMO procedure and it was successful, Ellie would likely have to be fed via IV fluids for the rest of her life and undergo intense therapies for several different things. She would likely never walk, talk, or do anything that a healthy child would do. This was not the dream that Eric and I had for her. That was not the life our daughter was meant to live. With the heaviest hearts imaginable, we decided against the ECMO procedure and to go ahead with the comfort care. We knew what this meant for us and for our future as a family of 4. At that time, we were told to call our families and have them come quickly to say their goodbyes to our girl. Sadly, several of our family members had not even had the opportunity to say their hellos at that point in time.
Our families and friends came to be by our & Ellie's side immediately. People stepped up in our lives in a way that no one had ever done before. We will NEVER forget the overwhelming amount of love and support we received during that horrible time.
We did not expect Ellie to hold on as long as she did. Through the next 2 days, she fought and fought to stay alive. During that time, we met with some of the infectious disease doctors because they had heard that Ellie had been exposed to Enterovirus at home. There was initially not a concern about all of this being caused by Enterovirus, but now the infectious disease doctors were telling us that it 100% was the reason why this was happening. In adults and older children with more established immune systems, these symptoms do not present themselves as severely if at all, which is why it is not more widely known. However, in newborns can be fatal, especially if they contract the virus during the first 2 weeks of their life. She said it was just sheer bad luck. I remember beating myself up because I felt like it was my fault for not separating the kids more and sanitizing everything more and just keeping everything more clean and germ-free. I will never forget how one of those doctors put her hands on my shoulders and looked me in the eye-- she said "This is NOT your fault. This virus is absolutely everywhere, especially in the summer time and she could have gotten it from absolutely anywhere." The viral panel results came back and Ellie did test positive for Enterovirus. However, they had also done a blood culture to confirm it, but this would take up to 5 days to get results back.
Also during these 2 days of Ellie's fight, one of the pediatric surgeons wanted to do a procedure on Ellie to reduce the amount of swelling her body was experiencing due to the amount of fluids and blood transfusions she was receiving. He had said that when they went to do this procedure, he was concerned about her intestines and whether or not they would ever be able to function normally again. He did another procedure to allow her intestines 48 hours to potentially heal from any damage sustained by acidosis. After the 48 hours were up, he wanted to look at her intestines again to see if there was any chance of them surviving or if they had been completely destroyed. I remember the surgery team went in and asked us to step out so they could make a decision, and we just waited in the hallway for about 15 minutes. We knew this would be a huge factor into Ellie's prognosis. When Dr. Pitcher stepped out of the room, he waved us over, took off his mask, and told us "She has a fighting chance"-- we were SO overjoyed! He was even overjoyed!
A short while later, around 5:15 PM, Eric and I were sitting in Ellie's room while the nurses finished up from the procedure. It was quiet and we were updating our families and friends on the good news we had just received. All of a sudden, we heard the beeping of Ellie's monitor and noticed her heart rate was dropping, her oxygen was dropping and she was having several heart arrhythmias. One by one, then two by two, doctors began running into our room and sprinting back and forth down the hallway, yelling. We had no idea what was happening. The doctor in the room at the time with us came over to notify us that Ellie's heart rate was dropping and they were preparing to start another round of chest compressions on her as she had stopped breathing again. They asked us to leave the room. We learned at this time that Ellie had developed a condition called coagulopathy, which prevents the blood from being able to clot. This was a big reason as to why her condition was so quickly deteriorating and happening so fast.
We stood out in the hallway with our families, watching and waiting, praying for a miracle. About 5 minutes into CPR, the fellow came out and said to us, "You need to let us know if you want us to stop." We told him to please keep going and to please do everything that they could for her. He went back in and I remember turning around because I just couldn't bear to look. A few moments later, Ellie's doctor Dr. Chegondi came out of the room slowly. We locked eyes and he just shook his head. He said he was so sorry and he fell to the floor with us as we realized we had lost our baby girl. We had to leave the hospital that night with empty arms, and face the harsh reality that we would have to let go of the dreams and plans we had for Ellie and Emmett together.
A few days later, we received the results of the blood culture which confirmed what the infectious disease doctors had suspected all along-- Ellie had passed away from complications due to Enterovirus. We knew nothing about this illness, but began researching extensively once we knew that was the cause of all of this. We learned of a few other parents around the world who had experienced very similar things with their babies after developing Enterovirus. Enterovirus and many other viral illnesses can be caused in babies by asymptomatic or mildly ill individuals who may display "cold" symptoms if they kiss a baby on the face.
Our goal for the rest of our lives is to carry on Ellie's legacy and help other families in her memory. We have founded and established a nonprofit organization called Don't Kiss the Babies. Our mission is to advocate and educate for the health and well-being of babies and young children, educate parents and families on the signs of preventable viral illnesses in the weeks following birth, and provide empowerment and support for parents of babies and young children everywhere.
I was just two months into my grief journey when I first discovered No Foot Too Small. I was terrified to open up to complete strangers about my grief and my experience because it was still so real and raw at that point. But with Ellie's guidance, I found the courage to attend a NFTS Mom's Group and share our story. Immediately, I felt a connection to the other moms in a way that be explained in words. These women have become some of my best friends and an incredible support system. Although we've all had to sacrifice so much to be brought together in this way, I'm beyond thankful that we have each other. There is so much comforting in knowing there is always someone who gets me, especially on my hardest days.
Thank you for everything you do. I wouldn't be where I am today without NFTS.
IN HONOR AND CELEBRATION OF ELLIE, DONATIONS CAN BE MADE HERE. ON BEHALF OF THE SITZMANN FAMILY, THANK YOU FOR YOUR GIFT.