her at all, until between two and three when we were starting to potty train. At that time, we noticed that she had very infrequent bowel movements and they were uncomfortable for her as a result. Our pediatrician felt we were headed in the direction of a condition called encopresis or chronic constipation, which backed up my own research. That cannot be officially diagnosed until the age of four ( due to willfulness being a possibility). By four, we were treating her with daily doses of Miralax and trying to modify toileting practices. Our hope was that she would outgrow it by around second grade. I was selective as to who I told about it- I did not want Tatum to be embarrassed or teased, but it was also important that she be understood.
To learn more about what encopresis is, what happens when you have it, how surprisingly common it is and how it is treated, please google it. I am not going to go into what it was like for our family to be dealing with this, but suffice it to say, I described it as our cross to bear. What needs to be emphasized here is that at no time are you ever told that this condition is, or can be life threatening. It is uncomfortable, messy, limits activities… at its worst, Tatum was actually sick and had to miss out on school and fun events. Not even our own families were aware of how it had consumed our lives.
When it was clear that Tatum was not getting better and in fact seemed to be getting worse, we started some promising new treatments. Just before the start of second grade, we were referred to a physical therapist specializing in such conditions. We started yoga, exercises to regain the muscle tone in her stretched out colon, massage, biofeedback...the list goes on. It was a lot of work and a lot of time, but we were all happy to be working towards having Tatum “ be like normal kids”, her most fervent wish.
Then, for some inexplicable reason, early in 2015, Tatum’s pattern changed. We asked questions, made calls, increased her sessions, tried everything we were advised to do, including starting the process of setting up an appointment with a pediatric GI specialist. After a particularly horrible weekend, I took her in to see her doctor. He said I had done all I could , now we needed to go over to the hospital. Tatum and I were nervous, but hopeful, that finally we would get her completely cleaned out (something which we had long speculated was the root problem) and then all the therapy we had been doing would finally make a difference.
The treatment that was decided upon at the hospital was to pump her full of a very strong liquid laxative that would take effect over the next several days. We anticipated an unpleasant few days, but then a fresh start. This treatment would have worked on almost everyone, but with Tatum, she was so impacted, there was no way it could get absorbed. She started swelling up, which put even more pressure on her vital organs that were already compressed. We were airlifted to Sacred Heart Children’s Hospital in Spokane to the ICU, where she received incredible care. We had a terrifying two days which included intubation, Tatum being hooked to 13 different machines, several surgeries and dialysis. One of the surgeries had removed most of her colon and some of her intestine, but when reconnected would have actually made things easier for Tatum.
The night before she died, she was stable, her organ functions were coming back and we all felt that we would be bringing her home eventually, after a much longer and much scarier hospital stay then anticipated. From the chest up, she was going to be the same Tatum and from there down, would eventually heal.
And then Tatum’s heart gave out.
Official cause of death was cardiac arrest. The secondary cause was necrotic bowel and infection of the bowel.
In the heartbreak and shock of the days that have followed, one of the few things that has given us any focus is to do our very best, for our Tatum, to make sure that we further research and promote education of and on these pediatric GI disorders. It is a woefully misunderstood and underfunded field and that needs to change, starting with the knowledge that a child can die, because ours did.
There will be much more that needs to be said… but for now, thank you for taking the time to read this and for helping us on this journey to make a difference, for Tatum.
As of June,2017, we have partnered with Seattle Children's Research Hospital to bring awareness of children like Tatum, with encopresis and related pediatric GI disorders. Following is a description of the research study we are helping to sponsor with funds raised at our TNJ 5K's.
Dr. Lusine Ambartsumyan is a Gastroenterologist and the Director of the Gastrointestinal Motility Program at Seattle Children’s Hospital. Dr. A’s research studies the mechanisms of continence to determine the biological triggers of fecal incontinence in children with defecation disorders.
Abnormal bowel function has a significant impact on quality of life -- both physical and psychological -- of children with these disorders. Approximately 30-50% of children with fecal incontinence were reported to suffer from psychiatric disorders due to the social and physical challenges they face in managing their disorder.
The biological and physiological causes of fecal incontinence are not well understood. Parents, caretakers and even medical providers are often confused about the origin of the issue, seeing it as behavioral, rather than biological. Abnormalities of the intestinal anatomy, the spine, and the nerve and muscle properties of the intestine can all be causes of fecal incontinence that may go unrecognized. The symptoms of the disease can vary widely from mild constipation and to severe intractable constipation and fecal leakage associated with abdominal distention, vomiting, poor growth, urinary tract infections, and urinary leaking. With confusion about disease, poor awareness, limited treatment options, and at times unpredictable and unsuccessful outcomes, research into the causes of these disorders is desperately needed.
At Seattle Children’s Hospital (SCH) we provide a comprehensive multidisciplinary program for patients who have struggled with bowel dysfunction. Through our research, our ultimate goal is to educate and improve the health, treatment options and long-term outcomes of children with defecation disorders.
Thank you for helping us to fight to make a difference for other children and their families, for our Tatum.
We realize that there have been many people wondering and questioning how Tatum died. We appreciate that most have been sensitive enough not to ask. The reason we have not shared it with all until now is that the thought of doing so was overwhelmingly painful. Yet we know that to accomplish our goal of furthering education on conditions such as Tatum’s, and campaigning to “ treat the child, not the diagnosis”, we have to tell her story. There is much more to that story, but this narrative will tell the clinical part.
When Tatum was born almost eight years ago, she was a perfect, healthy baby. We had no health issues with