Loss of a baby with trisomy 18

@kyle41 Welcome to Connect. You're not alone. I don't think anything I can say will ease your pain except to let you know that I care. I don't have children because I met my husband later in life. What has helped me cope with losses in my life is adopting cats from a shelter. That gives me a little soul in need of being rescued and I get to do that, and that helps me feel better.

I do know that grief is different for everyone, and it sneaks up on you when you don't expect it. Be kind with yourself and know that you did the best you could. When I was younger, my best friend unsuccessfully attempted suicide. I had sensed something was wrong leading up to that, and spent time talking to her trying to help and she was gradually withdrawing. We were high school friends and went to the same college and were roommates for a while. She was in a nursing program and struggling with the courses, and I was helping her with that. She had anxiety about failing and dropped out of college. I was shocked when I learned she tried. Her family wouldn't tell me anything at all except that she was in the hospital. That went on for a few months and she was in a mental ward. I thought that I should have been a better friend, and how come I couldn't prevent this? I had done everything I could think of to help. Perhaps that was some of her withdrawal, because a person needs to succeed with their own effort to have a sense of accomplishment. I felt the weight of that guilt, and it took me a long time to realize that I wasn't responsible. Evidently there were issues that had nothing to do with me. I did see her again after she came home, but she didn't have a lot of interest in our friendship. She may have thought that my life was wonderful, but I had my own issues I was dealing with. Many years passed, and I wondered if she was still alive. I did see her one more time, but we didn't have a lot in common anymore and we lost touch.

I do know it can help to walk out in nature among flowers and birds even if just to have a change of scenery and take a break from everything that reminds you of the loss. Your grief will have it's own timetable. I was taking care of my dad at end stage heart disease and staying at my parent's home. I had to hold myself together during the day, but at night, I couldn't sleep, so I put on music with headphones and just let myself cry and feel the depth of that emotion. As strange as this may sound, I found some beauty in the grief because it was an expression of love and I wanted to wrap myself in it. I had just adopted a cat and took him with me. He could make me laugh on some very hard days. The last month was very hard. I knew he was going to die and there was nothing I or his doctors could do to change that. My dad had also given up, and didn't want to live as an invalid. He had become so weak he couldn't roll over in bed. I had to get a Hoyer lift to move him and that broke his spirit. As hard as that was, we did have time to be together which was meaningful.

Don't hold your feelings inside. Let it out wherever you can do that and feel supported. I cried at night for a month, and one of the songs I listened to was reaching to my emotional connection to this loss. In planning his memorial, I created a video documentary about his life that we showed, and I used the song to end the program while it showed a sequence of photos of my dad from his childhood up until 2 weeks before he passed. It was a really beautiful tribute that touched everyone. It was a labor of love and it helped me heal. This is the song. "Who Knows Where the Time Goes?"

@kyle41 The pain that you describe on the loss of your son is heartbreaking. I hope you will accept my condolences. No one imagines that their child will predecease them and especially a 4 month old. As you wrote you and your wife did everything possible that you could for him and still that did not feel like that was enough. I think that the remorse perhaps guilt that you feel is more natural than one would imagine in this situation. Do your thoughts keep going back to what you could have done differently? What did I miss? What did the doctors miss or not tell me? Are you experiencing inward blame because of the Trisomy 18 diagnosis? What other questions and thoughts are going through your mind?

I am imagining you with your son in your arms and although painful how comforting that was for your son. And sad but somehow comforting for you as you held him?

Yes, people say things in which they believe they mean well. But it's not helpful at all. I don't know what I would say to anyone who said to me "well, you have your other son" or "at least he's not suffering anymore". I think that the best thing a person can do for another person who is grieving is listen and be present.

Is there a social worker associated with the hospital/clinic where your son was being treated who you can talk with? A pastor you can talk with? Perhaps a support group for parents who have lost their infants/children? And especially a group for parents of special needs children?

@kyle41 I am so sorry for your heartbreaking loss. I have experienced much grief in the last two and a half years; losing my adult son to suicide, and subsequently my husband to cancer, and last month my treasured pet.
One thing that has helped me, is online grief groups for your specific type of loss. Also, seeking out a therapist who specializes in grief. You may not feel ready for these avenues yet, but when you feel you could do them, it has brought much peace to my life. Walking with you in your grief….. ❤️‍🩹

With deepest sympathy,
Words cannot express the sorrow I feel for your loss. My heart aches for you, and I share in your pain, as I, too, lost a child—Lee Edward—five years ago. I know the depth of this grief, and I want you to know that it’s okay to feel whatever you are feeling. Give yourself all the time you need to grieve.
In my journey, I have found comfort in connecting with others who have experienced the loss of a child. If you ever feel it might help, I encourage you to contact The Compassionate Friends organization. They offer friendship, understanding, and hope to families grieving the loss of a child, grandchild, or sibling. Local chapters are available across the country.
Please know that you are not alone. My heart is with you during this incredibly difficult time.
With deepest sympathy and love, Bill

Dear @kyle41,

Words, as sincere as they may be, are hollow and inadequate at this most difficult time that you’re experiencing. You, your wife, and your other son have suffered a tremendous and unspeakable loss, and I offer my condolences to you and your entire family. I have not lost a baby, so I cannot even begin to imagine the depths of what you are going through. But my heart goes out to you. I am so sorry that you’re feeling this horrific pain and deep loss, and that you’re dealing with a new reality that you did not want, ask for, or need.

Everyone grieves differently and in their own way. But I assure you that everything you and your wife are currently feeling is normal. So, don’t hesitate to embrace and express your feelings however and whenever you need to. Grief is a process. So, take all the time you need to grieve and mourn; and take it one day at a time.

Despite how helpless you’ve felt, you and your wife fought hard and did all you could for your son. So, do not blame or second guess yourself. We all wish that there had been a better outcome, but this was beyond your control.

This can be a lonely time for you because people who mourn with you do tend to quickly move on. But you are not alone. Although there’s nothing that anyone can say or do to change or reverse this situation, or ease your pain, people do care. You may not believe it, and you may not even want to hear it right now (I can understand that), but, over time, your pain will become less intense, and it will get easier for you to feel more like your normal self.

It may take some time, but if or when you feel up to it, I hope you and your wife will consider joining a grief support group. These groups can be very helpful. Also helpful is counsel from your faith or spiritual leader, if you have one, and/or a therapist who can help you to work through your grief. I also hope that you will be comforted by the outpouring of love and support from family and friends. I am so glad to hear that you and your wife are helping each other as best you can. That is so important. Your other son will also be grieving in his own way and will need all the strength and support that the two of you can give him.

In the meantime, you have a family of friends here on Mayo Connect who care about you, support you, and grieve with you. And many are praying for you. We are here for you. Please remember that, and feel free to reach out to us if and as you need to. Wishing you strength, comfort, and peace.

Here is the link to a document that you might find helpful. It’s called The Mourner’s Bill of Rights.
https://www.centerforloss.com/wp-content/uploads/2016/02/MBR.pdf