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What We Learned From Losing a Child to SIDS

-Each year, there are about 3,500 sudden unexpected infant deaths (SUID) in the United States. These deaths occur among infants less than 1 year old and have no known cause after a thorough investigation is conducted, including a complete autopsy, examination of the death scene and review of the clinical history.

-There is nothing that can prepare you for what it feels like to find your child lifeless and cold. Your response to this may be extremely unhinged and frightening.

-An emergency operator will stay on the phone to walk you through CPR until first responders arrive. Upon arrival, they may escort you from the area while life saving efforts are attempted.

-Depending on whether your child is able to be revived, and the length of time they are unresponsive, you may be taken to the hospital for further treatment. This is not always the case. Our son was not revived, and as such, the scene remained within our home.

-If you stay at the scene, first responders will have to call a doctor to pronounce the official time of death over the phone. If your baby died prior to you finding them, then this “official time of death” is not the actual time of death, it is simply when the aid team calls it, after deciding there is nothing more they can do.

-Chaplains will likely arrive to walk you through what happens “after”.

-You may be required to reenact the scene, using a doll while video recorded/photographed. Your child’s body will also be photographed for forensics.

-You will be questioned thoroughly both by detectives, and the medical examiner/coroner, usually on the scene. Anyone else present when the death occurred will also be questioned (separately).

-Items of your child’s may be taken for evidence/testing. Once the case is deemed “closed”, you may get these items back from the evidence department. It will be upsetting when you retrieve them.

-It is okay to ask that someone take a photo of you holding your child/saying goodbye. You can also contact photography groups that offer services to have a local photographer come to take photos for you. You may not feel you’ll want them, but you may regret not having them later. The investigators could possibly take issue with this, but many won’t if you ask. (I was too afraid to bring this subject up, and regret it deeply to this day).

-Your child’s body will stiffen over the time all of this takes. If you are lucky enough to still be holding them, this will be jarring.

-After the initial investigation of the immediate scene is complete, the medical examiner will allow you to say goodbye to your child, and you will be escorted out of sight as they prepare the body, and take them away.

-Depending on the laws in your state, a social worker may be sent to your home for interview within 24-36 hours, in order to deem whether the case is unfounded, or of neglect. This is traumatic to accept, no matter the outcome. Our case was deemed unfounded immediately, but this part of the experience it was still extremely upsetting.

-Through all this, it is possible that not all professionals you encounter will respond sensitively to you and your family in the early stages of grief.

-In coming to terms with the reality of the child’s death, in coping with the practical arrangements that need to be made, in breaking the news to family and friends. Not everyone will have the compassion necessary to carry you through gently, so be prepared for the possibility of coldness or indifference.

-The funeral home will have you come in to make arrangements within a few days of receiving your child’s body. You may be asked if you’d like to see your child’s body during that meeting. It’s entirely up to you whether you say yes or no. We said no, and I regret it.

-After life expenses vary by choice of disposition. The funeral home may offer free disposition services for infants, most do. (This does not always include actual funeral/memorial services).

-Many funeral homes and hospitals offer casting and printing services for your child’s hands and feet, and can clip locks of hair for you as well. This process may be an extra expense.

-Autopsy and toxicology results can take months. Our sons took 12 weeks. A temporary death certificate will be issued until finalized results, at which point a new, and permanent death certificate will be issued.

-You can request a copy of your child’s autopsy report. It’s completely within your rights to do so. You’ll need to contact the corners office and ask for the form needed to do so. While we do recommend having this report in your own possession, we don’t recommend reading it yourself. It’s extremely graphic and may be upsetting/traumatizing. Try asking your doctor, therapist, or another medical professional to read through it for you, so that they can put it in more gentle terms for you.

-You will be given information for various local support groups, therapists, and foundations. Expect that some of these places may contact you on their own accord. You do not have to utilize the services of any of them if you so choose.

-There are several options for financial support during bereavement leave, like FMLA, and occasionally, employer exclusive funds/benefits. Look into your options, or contact a support service who can help you do so.

-When you first lose your child, everyone is profoundly impacted by your tragedy. Everyone mourns your loss with you, everyone pauses, if even brief, to feel the weight of your pain. That support and understanding may diminish with time. Others will move on, and it will be painful for you as you notice it.

-If you have other children, how and when you explain the death to them is your choice. You surviving children may or may not need professional assistance in dealing with their siblings death. We recommend discussing with their doctor, whether this may be necessary.

-Learning how to parent living children while also grieving the one you lost, is an uphill battle at times. You may be much more grateful for the lives of your living children, or you may find it harder to connect with them for a period of time. You might feel both of these things. It’s normal, and alright.

-Grief/bereavement therapy is extremely helpful in the first 12 months. You and your significant other may grieve very differently, and each of you may harbor feelings of guilt, blame, or resentment. I highly recommend joint therapy sessions for this, in addition to individual therapy. Make sure your therapist specializes in loss and or/child loss. We found our therapist through the local maternal fetal medicine practice.

-IT IS OKAY NOT TO BE OKAY. If you need to discuss medication for mental health or sleep related issues with your doctor, do so.

-In today’s society, social media exposure is extremely common. As the story of your child’s death circulates, some people may blame YOU. Crude things will be said. Your privacy WILL be breached, and your grieving methods will be judged.

–There are people who do not believe SIDS/SUIDS is real, and many of them will try to discredit you and/or the circumstances your child’s death. Be prepared for this, as you may experience this attempted altering of your narrative to fit their conspiracies.

-Monthly “anniversaries” will be triggering, yearly “anniversaries” will be triggering. Smells, sounds, words, feelings, photos, people, events… will all be triggering. (The sound of sirens is still a major trigger for me, where as, the sound of me calling for my husband from anywhere in the house, is still triggering for him) Expect sudden reactions from within yourself and others who are grieving your loss.

-People will say things that hurt. People may not say anything and that will hurt. Be up front with others. Tell them when something they’ve said or done, or not said or done, has negatively affected you. You may see the end of relationships with some friends or family due to all of this. It’s okay to have boundaries with your bereavement.

-It is important that you remember, and remind yourself often, that grief is NOT linear. Your individual process is your own, and provided you are not harming yourself or others, you need not apologize for how you choose to survive the unimaginable.

-Developing relationships with other bereaved parents will likely be beneficial for your emotional well being. No two peoples experiences along the journey of loss will be the same, but that doesn’t stop us from finding solace in the small places where our paths may have crossed or looked similar to one another. It’s the parts of our stories that allow others to echo in understanding, to feel seen in their own pain, that also help us.

-You will still experience moments of joy intermingled with your grief. Your pain is real, it will never dissipate, it will rear its head unexpectedly, it will empty you, drain you and tire you often. But with time you will learn how to share it with life’s other feelings and experiences.

*Written with the help of my husband

5 thoughts on “What We Learned From Losing a Child to SIDS Leave a comment

  1. This breaks my heart for you, and every other parent out there having to go through such a devastating loss 💔

    RIP, sweet little Sloan 👼


  2. Thank you for your honesty and openness to sharing such Intimate details about your experience with the greatest loss any mother/parent could ever know, the loss of a child. I am so very sorry you have had to live through this pain, and that others in your life have chosen to project their own demons and fear on to you to try to keep you from surviving. Congratulations to you on not letting evil win! Your truth and intent is clear when I read your writings, and I am certain you were placed in this earth to help others, there is really no doubt. I wish you and your family nothing but positive love and strength always.


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