How NOT to Treat a SIDS Survivor

by Darlene Buth

An edited version of the following article will appear in the Emergency Response chapter of the second edition of the SIDS Survival Guide due out by spring of 1997.

SIDS is something you read about but think can never happen to you. Then it hits you like a ton of bricks.

I seem to be a normal, happily married woman with two beautiful daughters. But what most people do not know is that I am the mother of three children, not just two. My oldest daughter, Amanda Lynn, is nine. My second daughter, Kayla Ann is three. My third child was a little boy who arrived on Sunday, July 23, 1995 at 8:14 PM. Although he came three weeks ahead of schedule, he was given a clean bill of health, weighing 8 pounds, 3 ounces. He was the apple of his parents¹ eyes..

Yes, we thought we were a complete family, with two healthy girls and now a little boy. Our dreams were all finally coming true. We named that little boy after his daddy, James Alan, and his grandpa, Pete: Peter James-Alan. We called him PJ.

Before we knew it the baby was six weeks old and it was time for mom to return to work. I loved the time off but I knew there was no way we could pay our bills unless I returned.. Fortunately, my husband and I worked different shifts so we shared child-care duties and didn¹t have to worry about child-care expenses. I went to work during the day and came home to my family at night.

Then one day our world caved in. I got up for work as usual on October 3.. I went downstairs, showered, got dressed, and fixed a bottle for the baby. I went back upstairs and fed little PJ. He drank his bottle and dozed back off to sleep. Part of me just wanted to stop time and just stay there cuddling him, but I had to go to work. So I gave him a little kiss on his head like I did every morning and tucked him back into his crib with his 101 Dalmatian friends. I didn¹t know these events were going to be turned into sweet memories ... just sweet memories...and never again would I be able to share sweet moments with my son.

At work, talk was on the O.J. Simpson trial. Today the verdict would be in: Would he be convicted of murdering two people or would he be acquitted? Then everyone heard that O.J. was a free man. All the talk about whether it was a fair trial and whether O.J. was guilty or framed was going to have a lot of significance for me in a short time.

Someone from Personnel came in and told me I had to go home due to a family emergency. ³Don¹t bother with cleaning up. You have to get home and I¹m taking you.² she said. I had no clue as to why. Thankfully , I lived only three blocks from work. When we pulled up to the side of my house, I saw a police officer standing outside talking with our insurance agent. Yes, I did recall he was due to stop by with some paperwork, but what did this have to do with the police? ³What¹s going on?² I asked. ³Just go in the house and you¹ll find out,² I was told. I walked into the house, where you could have heard a pin drop. There was another police officer standing in the dining room. My husband was in the living room dressing our two-year- old. I looked around the room and did not see my son. ³Oh my...where is my baby?² Complete silence answered me. My husband finally said the baby was on the way to the hospital. He had gotten up to answer the door and came back to find the baby not breathing with bluish skin. He called 911 right away and called work for me to come home. We received no words of encouragement from the police officers. Not even ³ I¹m sorry for what you are going through.² Nothing. All they said was, ³We¹ll be back later to question you about what happened.² Question us about WHAT? I didn¹t know what had happened. or why it happened.

The ride to the hospital was long and dreadful. Though we lived only 15 minutes from the hospital, it seemed like hours. All the way there, my image was of holding PJ that morning and seeing him smile at me when I laid him back in his crib. I thought he had to be alright because I loved him and he was an important part of my life. I hoped he would be crying for his mother when I got there.

At the emergency room we were met by a couple of nurses. I could barely get the words out: ³Take me to my baby; I want to see him now.² They led us to a small room and said the pediatrician would be in to talk to us in a moment. All I could think of was, ³NO! This cannot be happening to me! Not my little boy! He¹s a healthy boy.² Well, the doctor came in and told us that they had done everything they could but could not bring my little boy back. I just wanted to scream out, ³This isn¹t fair! You can¹t take my little boy away from me² They said we lost our boy to ³Sudden Infant Death Syndrome²: No clue as to why --just that he died peacefully. I still have to ask why God took my little boy¹s life away and gave O.J. his freedom. This just does not feel right or fair to me. They led us into the examination room where PJ was lying so peacefully in a little crib. My husband was by my side carrying our little girl. They notified my parents. My husband¹s parents were already on the way to the hospital. They also called our minister. They told us to say our good-byes, and all I could think of is ³How do you say goodbye to your baby?² I sat down in the rocking chair and they placed the baby in my arms, just as they did when he was first born. He looked so peaceful, as if he was just sleeping. I just wanted to shake him to wake him up, I needed to tell him that I loved him and that I needed him to be alive, to just please start breathing again for mommy. I just wanted to take that baby and run as far as I could, but I could not even find the strength to get up. Somehow we found the strength to leave the hospital, only to go home and face more tragedies and pain that would never go away.

Back at home, still filled with shock and disbelief, we were greeted at the door by the police and two people from the human services department. They separated us. A police officer and a worker from human services questioned my husband in the front room and I was questioned in the kitchen. There was no sympathy or understanding from these people. ³What kind of life insurance policy does the baby have? How much is it worth? Who is it payable to? How is it payable? How does your husband treat the children? Why does your oldest child have a different last name? Where is her father? Does your husband feel angry or bitter that he has to support her? Are you collecting child support from her father? What kind of temper does your husband have? Has he ever lost his temper? Is he violent? Do you feel safe with him? Do you feel that the children are safe?² During this questioning, my in-laws came in with my two-year old. They were told to leave the house and take the child with them and that they could come back when the questioning was done. But after awhile my mother-in-law came back in because she was concerned about what they were doing. She was not allowed to say anything, but at least she was in the room with me. After they stopped grilling me, they toured the house. My husband led them to the couch where PJ had been. They took pictures and said they needed to check out the rest of the house. We took them upstairs to the girls¹ bedroom. There was only one bed set up. They wanted to know why. We tried to explain to them about the recent recall of bunkbeds. Our two-year- old had gotten her body stuck in the headboard. We didn't want to take any chances, so we had sent the girls¹ bunkbeds back. We told them we had to buy another mattress so we could set up the other bed. I couldn¹t understand what the big fuss was all about because my two-year-old loved the chance to sleep in daddy and mommy¹s bed and to take Daddy¹s spot when he was at work. But these people wouldn¹t listen. They just said it was wrong and a two-year-old should be sleeping in her own bed. They wanted to know what was in all the boxes and bags in the closet. We told them it was clothes that the children needed to grow into. They told us to get them out of there because it was a fire hazard. ³And, by the way, we could give you a fine for that.² I just couldn¹t understand what they were trying to do. Where was the compassion? The caring? Where were the kind words? Why were they treating us this way? What did we do? We just lost our son. What did all this have to do with it? We found out the answer to that a long, horrible week later. We were being accused of foul play...insurance fraud. They wanted to remove my daughters from our home because they thought it would be in their best interest. All this threw me completely off balance: How could they think anyone was capable of harming their own baby, let alone killing him? I never could or would harm any one of my children or anyone else¹s children. I kept telling them over and over that I would not harm my baby for money. Money means nothing to me. If you bring my little boy back I will give you all the money I have All I want is my son back, alive and healthy. They left the girls with us, but they did not stop harassing us. They continued to investigate for insurance fraud.

We somehow made it through all the funeral arrangements. We picked out an infant coffin and had his bumper pad from his crib cut to fit the coffin. We also had his crib sheet and comforter put in his coffin. This way he looked like he was peacefully sleeping in his own little bassinet with his 101 Dalmatians looking after him. We bought a little miniature yellow tonka dump truck representing the big one that he was going to get for Christmas. We created a little memory board with all his pictures on it. The next few weeks were terribly difficult, still being questioned by the police for foul play even after the autopsy showed no signs of foul play and that our baby had died of SIDS. It was just before Christmas that we finally got the police off our backs about the insurance fraud. The chief of police called and wanted to come to our house to discuss results of the blood tests. We knew nothing about any tests, so we called the hospital to try to find out what was going on. The hospital could not release any information to us and told us to call our doctor. Our pediatrician was very confused and shocked when we told him we were under investigation for foul play in the death of our son. He told us that after the autopsy no further blood tests had been ordered. There were no results because there were no tests. This doctor was not only our children¹s pediatrician but also the doctor the county used in cases of child abuse. If he had ever seen a problem, he would have been obligated to report it to the proper authorities. But he had never seen any signs of child abuse in our family. Therefore, he called the police and told them in no uncertain terms that there had been no foul play and that they were not helping to ease our grief with their handling of the case.

To be accused of killing our own child is something that I will never forget or understand. We loved our baby and would do anything to bring him back. It is obvious that a lot of professionals who should know about SIDS do not know anything about it. Why can¹t professionals be trained to deal with situations involving SIDS? Why do these people treat parents with so much contempt? If all their questioning is part of their job, why can¹t they figure out a better way of doing it? SIDS is a very tragic, painful experience, so why do they add to the pain? Sudden infant death syndrome ³SIDS² is defined as the sudden death of an infant under one year of age which remains unexplained after a thorough investigation, including performance of a complete autopsy, examination of the death scene and review of the clinical history.*

SIDS is a silent killer, In those cases that have been observed, the infants do not cry and there is no struggle.*

The incidence of SIDS increases in the fall, winter and spring months. In the southern hemisphere this occurs in June, July, and August.*

Male infants are slightly more susceptible to SIDS than females. However, this is true for most diseases affecting infants and children. While characteristics such as prematurity, low birth weight, maternal substance abuse, maternal smoking, little or no prenatal care and young maternal age are considered risk factors for SIDS, 70 percent of the infants who die of SIDS do not have or are not exposed to any risk factors. It should also be noted that the risk factors are not unique to SIDS but are present in other prenatal deaths.*

SIDS is not hereditary*
SIDS is not contagious*
SIDS is the number one cause of infant mortality in the United States*
SIDS occurs at a rate of about 1.5/1000 live births*
Approximately 6,000 infants die of SIDS every year in the United States*
SIDS is not caused by vomiting or choking*
SIDS cannot be predicated or prevented*
SIDS occurs among families of all social and economic levels*
SIDS is nobody¹s fault *