Questions About SIDS

I still cannot believe my daughter died from SIDS.
Do parents ever believe? To me saying she died from SIDS doesn't answer anything.

You are right, if she died of pneumonia or meningitis that is something very tangible. SIDS just raises more questions.

And here are the questions you may ask:
What did I do wrong ?
What could I have done differently ?
Why did it happen to her, she was doing so well ?
She slept on her belly, did that cause it ?
She was not always breast fed, did that do it ?

Most of the answers to these questions are nothing or no.

My daughter was not quite seven weeks old when she died. Most SIDS deaths happen between 2 and 4 months.
Does this mean anything?

No, infants die of SIDS at 7 weeks old.

My daughter was very sick when she was born. My labour lasted three days. I'd had a cesarean with my son (who is now almost 3 yrs.) so I was determined to have "natural delivery". When she was born she had bacteria in her stomach, collapsed lungs and an extremely rapid heartbeat. She was taken to NICU immediately, where she remained for three days. The doctors could never explain why she was so sick. Could it have been the trauma of a long, hard labour? (she had broken blood vessels in both eyes) Should I have had a cesarean? Could this have anything to do with her death?

Probably not. Many babies are born with those blood clots in their eyes. This is normal and signifies that they were exposed to labor. Even babies born by C/S can have these hemorrhages.

Once she was out of NICU, the doctors released us the next day with a prescription for antibiotics. She seemed to be very healthy. She weighed 8lbs 1/2 ounce when she was born. She was breastfed. She was an expert nurser. She weighed approx. 10lbs when she died. She had one episode when she was about three weeks old where she "stopped breathing" and my mother-in-law had to "blow in her mouth".
Does this mean anything?

Maybe. This may have been an apparent life threatening event (ALTE). Babies who experience ALTE's are at greater risk for SIDS and the more episodes they have the higher the incidence of SIDS.

She slept on her stomach. (This causes many feelings of guilt) The night she died was the first time she slept out of my arms. My son (then two) was having a hard time sleeping so he crawled in with us. There was not much room so we put her in their room in a cradle/swing (which I did not know at the time had never been sold in Canada and was recalled in the States.) The blanket she slept on was slightly padded. When I found her, her mouth and nose were clear. She had a small amount of blood on her nose and mouth (which I believe came out as I picked her up.) I have always felt strange not knowing what time she died. I last saw her at 2:30 am, I found her at 7:30 am. (It was normal for her to sleep from 11pm to 6am. Is sleeping for long periods of time considered a risk or dangerous?) When I picked her up she was very heavy, it felt like all her weight was in her head. Her body was limp all over. She was slightly pale but other than that and the small amount of blood she looked "normal". Her lips were not blue, etc. At the hospital I overheard a police officer say that it looked like she had "been dead for several hours". How can they determine this? She still felt warm to me when we found her (maybe my imagination?) But I remember holding her at the hospital 1 1/2 hours after we found her and her skin was definitely cold and her lips were blue. My husband's cousin and I both gave birth to our babies within weeks of each other. My daughter died September 9th. Her baby died November 12th. Both were SIDS.
Any comments on heredity?

Sudden unexpected infant death in the same family would suggest an inborn error of metabolism (metabolic defect like MCAD deficiency) or a toxin in the house (assuming they both lived in the same house). SIDS is thought to be a more frequent occurrence in subsequent siblings.

I guess the question I most want answered is could she have suffocated? How can they tell the difference during autopsy? She was not even 7 weeks could she maybe not have been strong enough? Is it natural for parents to feel like their child suffocated?

When you found your daughter, her mouth and nose were clear. She did not suffocate. There are differences that may be seen on autopsy.

I'm sorry that I'm asking so many questions.

I am sorry that your daughter died. You will always have many questions.

I hope this helps.

JDDeCristofaro, MD
University Medical Center
Stony Brook, NY
Infant Apnea Program

2/7/97

Someone asked about SIDS being dropped to #3 in infant deaths - is that right? How does that then change the stats of percentage of SIDS to live births. Alot of what I've read mentions approx. 1 in 650 or 2 in 1000. Is this outdated?

There has been some confusion about the infant mortality rates. SIDS has always been, and continues to be, the most common cause of infant mortality after the first month. SIDS has never been the #1 cause of total infant mortality, however, because of birth defects. The preliminary rates for 1995 (expressed as SIDS rate/1000 births) are: 1.69 for Congenital Anomalies, 0.98 for Disorders Related to Short Gestation and Low Birth Weight, and 0.84 for SIDS. Since the 1995 numbers are not final, you may see some rates that look a little different. For your interest, #4 on the list is Respiratory Distress Syndrome (the lung disease affecting preterms), at a rate of 0.37.

In summary, the news is both good and bad. About 900 fewer babies died of SIDS in the U.S. in 1995 compared to 1994! However, SIDS is still the most common cause of post-neonatal infant mortality, so we still have much work to do and still a very compelling message for raising money for research and for support programs.

Dr. Carl Hunt
Washington, DC/Toledo

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