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Infant loss stories are hard to read, but they are essential to helping us remember the lives of tiny loves gone too soon. They also teach us invaluable lessons–in this case, how knowing the symptoms of infant sepsis could save lives.
Kara Errico shares her infant loss story about her daughter, Addie, who passed away suddenly at 7 months old, due to peritonitis, ruptured appendix, and sepsis. I’m honored that Kara chose this space to share Addie’s story.
A New Baby Sister
My story began like so many others. When we were ready to tell our friends and family that we were expecting another baby, we invited our parents and grandparents over for a Mother’s Day pizza dinner at our house. We already had one daughter, and we got a cute t-shirt for her to wear as an announcement. We sat her down privately and quickly explained that she was going to be a big sister. Then, we put the t-shirt on and sent her into the living room with the ultrasound pictures from our first OB visit. She was thrilled to announce a new baby’s anticipated arrival.
From this point, things went smoothly for a while. My pregnancy was easy. I had a c-section scheduled, which makes everything feel controlled. But Addie had different plans. My water broke in the middle of the night the day before my scheduled delivery date. Addie made her entrance into the world a day earlier than planned and with a different doctor, but the c-section went great. Addie was an adorable, healthy baby with the biggest cheeks ever, the kind you want to pinch and squeeze for days. She was a healthy child; we never would’ve imagined that infant loss would eventually become part of her story.
Addie’s First Few Months
Being our second child, Addie didn’t receive the paranoid and scared first-time parent treatment her older sister had. When you have your first child, you’re still learning the ropes, and you’re scared–you’ve heard dozens of infant loss stories already. By the second child, you feel more like you have the hang of things. Rather than sequestering her to the house for a full six weeks as I had the first time around, I had to get her out earlier. Life with a now 3-year-old wasn’t going to stop just because there was a brand new baby in it.
Shortly after celebrating her first New Year’s Eve (a holiday that now destroys me emotionally), she came down with a little cold, which we expertly acted on, as we’d done with so many illnesses with the first. Thanks to my instincts and watching a few YouTube videos, however, we soon realized her breathing was a bit more labored than it should’ve been and took her to the hospital.
Our little Adelyn had RSV.
She ended up staying a few nights for breathing treatments. But, man oh man, was she a fighter!
Looking back now, we realize we could have lost her at that point (7 weeks old). Thankfully, we were blessed with a few additional months with her.
Unlucky Number 7
7 may be the “lucky” number, but it’s not for me. Thanks to Addie, I work in inverse; the number 13 feels lucky (that’s the day of the month Addie was born), while 7 represents too many problems: RSV at 7 weeks, and then all that came at 7 months.
Right around the time she turned 7 months old, Addie came down with what we thought was her second ear infection. (Cue the mommy guilt that always cropped up with my formula-fed babies, thinking of all of those statistics about breastmilk warding off ear infections!) As we had done with the first ear infection, we took her to the doctor, who put her on a course of antibiotics.
Because she wasn’t feeling well, I decided to wait to take her 7-month pictures. I remember looking at her one day and thinking, “I’ll just wait a few days before taking her monthly pictures and posting them on Facebook until she’s feeling better.”
Little did I (or any of us) know what was happening under the surface, or that I’d never have the chance to take and share those happy baby milestone photos.
Now that I’m telling her infant loss story, the flashbacks to those awful final few hours with her haunt me. I expect they’ll haunt me for all of my days. I brace myself for more sleepless nights each time birthday approaches, or the day of her loss, and grief rears its head anew.
Our Greatest Loss
Addie did things on her own terms–both coming into the world, and leaving it.
She died on on June 22, 2017. On the day she died, my husband was over 3,000 miles away, having begun a new job for which we were about to move. I think of his experience learning of the loss of his infant daughter and fresh tears arise.
Neither of us has it “worse” when it comes to our grief. But, after they called her time of death in the ER, I got to hold her; he had to witness that horrible truth via FaceTime on his mom’s phone. My heart breaks over and over for him.
Shortly after we buried Addie, we moved across the country to join my husband. This was not the new family journey we had anticipated.
Not Your Typical Infant Loss Story
Our story is a bit different, and yet, it is like so many others, full of grief and “what ifs.”
I took Addie to the urgent care clinic for an ear infection just two days before she died. My intuition said that her tummy had been hurting her too. We were used to her having gas pains and needing the sensitive formula, but I mentioned my concern to the doctors anyway. I was so sleep deprived that I barely noticed that the medical team never even pressed on her stomach. The diagnosis was an ear infection, so we treated that and thought nothing else of it. I didn’t worry about it.
Addie’s death was sudden, but she was not your typical SIDS case of sleep-related infant death. There was an autopsy, and it took a little over 5 months for us to find out what had taken her from us. I held it together when speaking with the coroner, knowing I was far luckier than many others–at least I was getting an answer. But that answer nearly did me in. The culprit was in her stomach. Peritonitis, ruptured appendix, and sepsis had stolen our baby.
After learning Addie’s cause of death, I remember going into her older sister’s bedroom and falling apart amidst piles of toys. I couldn’t help but think back to the day I’d taken Addie to the urgent care clinic for her what we all thought was an ear infection.
Addie’s is not an infant loss story. Her official “cause of death” is not Sudden Infant Death Syndrome (SIDS). Addie was lost to a common ailment in adults that is difficult to recognize in children.
Brief Medical Explanations: Peritonitis, often deadly, is inflammation of the peritoneum, a membrane that lines the wall of your inner abdomen, covering your abdominal organs. It’s often the result of some sort of rupture within the abdomen. Without our even being aware of it, Addie’s appendix had ruptured, leading to peritonitis, and eventually sepsis, a life-threatening complication resulting from the body’s extreme response to infection. Both peritonitis and sepsis are common after appendix rupture, and both are usually deadly if not treated immediately.
The Importance of Community in Grief
Around the time of Adelyn’s first birthday, a dear friend posted a piece about Addie’s death on her blog, Real Life Crafted. This post helped me see everything through new eyes. While the tears were pouring down my face reading her words and thinking of the “other” side of my story, I came to realize that I wasn’t in it alone. Having a strong community is essential for getting through grief.
Having met others in the loss community (through online discussions and private messages only at this time – I can’t yet bring myself to go to any of the face-to-face local grief group meetings), I know that I’m surrounded by others who truly “get it.” And I also know that I’m very fortunate to have a wonderful support system behind me all the way, sending prayers and love constantly. Not everyone has that. In fact, many moms who tell their infant loss stories say they have lost friendships and had loved ones make unfortunate, hurtful comments. We need to learn to do better for one another.
The System Failed, but We Can Learn and Prevent it from Failing Others
The night Addie died, my husband took a redeye home and we scheduled an emergency session with his psychologist for the following day. The wisdom he imparted has stuck with me.
It was the system that failed us, not any one individual.
As this wise man continued, he said it was natural to want to place blame and seek retribution of some sort, yet no one caught the problem in time to fix it–not me, not the urgent care staff, not the pediatrician’s office staff whom I’d consulted by phone (we were located more than an hour from the pediatrician at the time, which is why I took Addie to Urgent Care).
No one. There was no one to blame; the system as a whole had failed.
It seems so cliché, but I feel like I now have a purpose. I want to connect with medical professionals (pediatrician’s offices, nursing schools, teaching hospitals, etc.) I need to share our story so that they can recognize the signs that were missed with my daughter. From the little bit of research I’ve done, which the coroner confirmed as well, a ruptured appendix is beyond rare in someone under the age of 2 and extremely difficult to diagnose.
A huge part of that process involves education–for parents, caregivers, medical professionals–about sepsis in infants. I think educating nurses is especially important since they interact with patients more closely than medical doctors. Sepsis in infants is extremely rare, but when it happens, noticing the signs and seeking immediate treatment saves lives.
Signs of Sepsis in Infants Include the Following:
1. Fever (above 100.4 degrees). Any infant under 3 months with a fever should go to the ER for a sepsis workup.
2. Elevated heart rate
3. Fast respiratory rate or difficulty breathing
4. Clammy, cold, pale skin (because all the blood is going to vital organs)
5. Not acting like their usual self
6. Acting disoriented or lethargic
8. Decreased urine output
9. Moaning (included because I’ve known babies to do this, and it’s a clear sign of a baby acting abnormally. I have not seen it listed specifically as a symptom anywhere.)
Sepsis can be diagnosed easily by blood tests or other work-ups, so if you are concerned your child might be septic, advocate for those tests. Learn more from the Sepsis Alliance.
I want to fix the every mechanism that failed Addie in some way. I know our story ended tragically because of a seemingly “freak” thing. But if there is any way I can impart something to others and help mend the system that failed us, I can only hope it will save a precious little one (and his/her family) from succumbing to this same fate.
Katy Huie Harrison, PhD, is an author, mom, recurrent miscarriage survivor, & owner of Undefining Motherhood. She lives in Atlanta with her husband (affectionately known on the internet as “Husband,”) son (Jack), and dog (Charlotte). She believes our society puts too many expectations on women that make womanhood and motherhood restrictive. Her goal is to shift the paradigm about what it means to be a woman and mother, giving all women a greater sense of agency over their own lives. You can find Katy and her work featured in places like CNN’s Headline News, Romper, Scary Mommy, Demeter Press’s Motherhood and Social Exclusion, & more.