Saturday, September 24, 2011

A Diagnosis, But Not an Answer

Recently, we received the report from the Sudden Unexplained Death in Childhood (SUDC) Research Program on the cause of Natalie’s death and I wanted to share it with you. As you may recall, the original autopsy from 2007 listed the cause of death as “acute bronchitis and bronchiolitis.” This came after seven months of investigation that involved microscopic analysis of brain tissues, heart, and other vital organs. At the time, the Medical Examiner told us that her diagnosis came because there was nothing else wrong with Natalie. She said “I had to put something.” Needless to say, this hardly gave us much confidence in the diagnosis. When we googled bronchiolitis, we learned that it is an illness with a steady progression over a period of days to weeks before it becomes life threatening. This did not fit Natalie’s symptoms or her sudden death.

Now, after years of going through all of Natalie’s prenatal, pediatric, and post-mortem records, as well as a detailed family history and description of events leading up to her death, Dr. Krous, the head researcher for the SUDC Research Program, has shared his opinion with us. He wrote, “In the final analysis, none of Natalie’s pathologic findings are sufficiently severe, either singly or in combination, to be considered lethal. Therefore, based on the information available at this time, we consider Natalie’s cause of death to be SUDC.”

SUDC is a diagnosis of exclusion. It means they don’t know. There is no reason why Natalie, a happy, healthy little girl just stopped breathing and quietly died in her sleep. No reason. No reason.

On the one hand, it is reaffirming that my instinct at the time was that her illness (which seemed like a cold) was not severe enough to be lethal. Therefore, I didn’t miss something and there was nothing I could have done. It’s a start to putting my mind at ease.

However, it is also infuriating because we are left with nothing, no explanation, no answer for why our precious girl left us.

We are extremely grateful to the SUDC program for the time and effort they put into finding an answer for us. SUDC is rare, but we are not alone. I invite you to watch this video to learn more about it:

Since SIDS research spread the word about putting babies to sleep on their back and other simple safety measures parents can take, the SIDS rate has been cut in half. Perhaps one day, with the important work of Dr. Krous and the SUDC Program, the same will be true of SUDC. It won’t bring Natalie back, but it might help save another child and another family from having to endure the tragedy we have to live with every single day. (I’m never comfortable asking for money, but if you can, please consider sending a donation to the SUDC Research Program in Natalie’s memory. You can donate through their website. There, I did it.)

Christopher and I remain ever grateful for your love and support, especially in those first terrible months after we lost Natalie. It is hard to believe that we are now 4 1/2 years from that time. Much has changed in our lives — we now have sweet, little Gabriel, who is rapidly approaching the age Natalie was (he’ll be that age on December 28 this year), and our beautiful Roslyn is a 3rd grader and a wonderful big sister again. And much has stayed the same — we will never stop missing and longing for our Natalie Joy.