One of our newest Preemie Parent Mentors is Belinda, a preemie mom who has experience dealing with both loss and feeding issues (among other challenges). She’s the proud mother of fraternal twins (a boy and a girl) who were 3 months premature. Her daughter had a very complex 5 ½ month NICU stay during which she had two major surgeries and multiple ventilator events, amongst many other “unforeseen” complications. She came home with oxygen, an apnea monitor, and a mic-button (or G-tube). Her son, heartbreakingly, never made it home. Belinda shared this advice for preemie parents dealing with loss of a multiple:
There is no heartache in this world like that of losing a baby, to also have their sibling waiting to be born or subsequently born prematurely makes an already very stressful, tragic and difficult experience even harder to cope with.
When I was told the ultrasound tech could not detect the heartbeat of my VERY active and healthy 27 week old fraternal twin son… it felt like all the light had gone from my world and I was left in darkness. I felt my heart break and a desperation I have never known washed over me. I so wanted the OB to DO SOMETHING, there had to be a way to save him, but that would jeopardize his twin sister… who then was delivered only 1 ½ weeks later.
In the weeks that followed, I stumbled on some suggestions of things that other parents who have lost a baby in a multiple birth did that eased some of the pain of his loss. Here are three things that helped me cope:
- I named him as I otherwise would have.
- I held my son. I wish I had had more time, but I loved what precious time I had. You can request alone time in your hospital room with your baby to bathe them or just hold them (something I wish I had known with my son). Some hospitals are also allowing parents to take their baby home to spend time with them after a death (though some states do not allow this).
- I had pictures taken of my son. I know how this may sound and honestly, at first I didn’t want to. It seemed morbid and awful, but the more I thought about it, I knew there would never be another time I would be able to have a picture taken of my beautiful boy here on earth. You may feel, as I did, you will never have the strength to look at them. It took several months before I was able to look at them, but they do bring me comfort. I didn’t want to miss that opportunity. I also I wanted to have pictures of my son for his twin sister who may want to see a picture of her brother someday. Most hospitals have a service called “Now I Lay Me Down to Sleep” which provides FREE photography for your baby or babies that have died. These volunteer professional photographers are very sensitive and compassionate, and make every effort to obtain a picture of your baby or babies in the most beautiful and peaceful way.
There are also, unfortunately, some very hard, painful and unpleasant but important decisions that need to be made after the death of your baby.
Something that I couldn’t even think about planning was my son’s funeral arrangements. You may not be able to make this decision at such a tragic time in your life, especially when you have another baby or babies still in the NICU fighting to live. It’s the last thing you want to have to do, especially when you were expecting all of them to go home with you. The best thing to do is ask someone you trust to help you handle the arrangements.
I did not… could not have a service for my son until the first anniversary of his death. I had a small family ceremony at home. Honestly, it was better for me to have it then instead of right after his delivery with his twin sister so sick in the NICU. Waiting allowed my son his day and to be recognized for his life. You may want to hold a memorial right away, however, and you should do what feels right.
I know these are very sad times for you and your family and I wish you did not have to experience. Please know YOU ARE NOT ALONE!