“I wish my doctor had discussed it with me.”

doctor with mom

Mother of three Caileigh St. Jules lost her premature baby boy, Malcolm, to SIDS just a few days after bringing him home from the NICU.

Here, she shares her family’s story and the information she wishes she would have received from her doctor.

SIDS storiesCaileigh, please explain your SIDS experience.

I battled to keep my son in for most of the time I was pregnant. My water ended up rupturing at 28 weeks, 6 days, and I had him at 29 weeks, 5 days.

It was a smooth delivery. I woke up to a contraction at 4:30 a.m., and Malcolm was born at 9:11 that morning.

He breathed immediately on his own and never needed assistance. Other than being premature and needing to learn to eat, he had no issues. He was 3 pounds, 9 ounces at birth and he spent 38 days in the NICU. He was nursing at 31 weeks before coming home and weighed 6 pounds, 1 ounce when we left.

Malcolm was an easy baby and moved a lot in his sleep, groaning when he stretched. He was doing amazing. He was home for nine days.

The night before it happened, I washed him and put lotion on him. For some reason I felt it needed to happen before bed, even though it was almost midnight.

I got him dressed and combed his hair for the first time. He had so much of it. I nursed him and burped him and we went to sleep just after midnight.

I awoke to my alarm just after 7 a.m. and just laid there to wake up for a few minutes. Malcolm just looked like he was sleeping. Then I realized he wasn’t moving like he normally did.

I looked at his chest like many times before to see if he was breathing. This time he wasn’t, and my heart stopped. I touched his face and it was cold. He was cold and it hit me.

I howled in deep pain until I ran him downstairs to my husband who was with our other son, already awake. I screamed he’s cold, he’s dead, he’s cold over and over. My husband told me to call 911, and I went upstairs while he attempted CPR. My 5 year old son saw the whole thing.

Paramedics arrived moments later, but I already knew Malcolm was gone. They took him to the hospital and attempted resuscitation for half an hour until they pronounced him dead. They let me hold him while they asked me questions and police examined our home.

The next day an autopsy confirmed SIDS, and our world has been a fog since.

What did you know about SIDS before you lost your child?

I knew that sometimes it happened. Babies died for no reason.  I had never known anyone who had lost a baby before this, and I knew Malcolm was at risk for certain things like sickness because he was premature. That’s why I took extra precautions, but never in my life thought this would happen especially after having three older children.

What do you wish you had known sooner?

I wish my doctor had discussed it with me when he was being discharged from the hospital. I asked him if there was anything I should be aware of because of his prematurity. I wished I had stayed awake or wasn’t so tired that night and maybe I would have woken up in time.

Have you or someone you know lost a child to SIDS? We invite you to share your story here.

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