As a bereaved parent that’s gone through losing a child to a terminal condition at birth, I feel that I now have a duty and responsibility to help others going through a situation like this. If you are a friend or family member of someone currently going through this, it is difficult to know what to say or do in order to be helpful. Most people haven’t been through anything like this, so it is normal to feel a bit lost when it comes down to helping your loved one. I’ve put together a list of things that I found very helpful through this process, in the hopes that it can help others be better prepared to navigate these difficult times with a loved one.
First of all, let me express my condolences. This is the most heartbreaking thing I’ve ever been through, and it pains me to think of anyone else having to experience such a loss. A loss like this is devastating for everyone involved, and it is so important to provide a support system for anyone in your life that is experiencing such heartache. The fact that you are reading this already makes you an amazing friend. So, know that you are already doing more than most, and your friend is so lucky to have you in their life!
Helpful things to say and do during the pregnancy:
- Say something. Even if you say “I don’t know what to say”, it is helpful to hear from people. Silence is the worst thing in the world. Make sure your loved one knows you are there for them. Say you are so sorry, say you are here for them (whatever they need), and ask how you can help. Specific words that I felt to be incredibly helpful, were when people told me how strong I was and what a good mother I was.
- Expect no response. Navigating these waters are brutal as a parent. While the messages and phone calls are EXTREMELY helpful, it is not always easy to respond to everything. Give the person an out and say “No need to respond”. It takes a lot of the stress off of the parent, while still letting them know you care.
- Ask if it’s ok to talk about the baby. If the baby has been named, us his/her name. These parents have limited time with their child, and I always loved talking about my daughter. Yes it’s a brutally sad situation, but I still wanted to talk about her. You are not reminding the parent of the sadness by bringing it up (they never forget), so go ahead and ask if they’d like to talk about it or not. It’s much better than avoiding the topic like it isn’t happening, because it is very real and very much in the forefront of the parent’s minds.
- Offer to watch an older sibling. If the parents have older children, it is a huge gift to help them out and offer to watch their children as they grieve. It gives them a moment to breathe and not have to deal. Not to mention, they might have some appointments coming up that they’ll need the help during as well.
- Offer outside support. Sometimes it’s incredibly helpful to talk to someone that has been through this, and usually friends and family cannot fill that void. You can however, direct them to a group of people that has. I recently started a group on Facebook for those considering Termination of Pregnancy for Medical Reasons. I also have our entire story (from the questions we asked the genetic counselor, to our thoughts leading up to our daughter’s birth, and our thoughts after her death) compiled on my blog at this page. You can search Facebook for groups relating to specific conditions (like trisomy 13), and find resources online. Never assume you know the decision that your loved one is going to make (terminate or carry to term) as it’s an incredibly personal and situation specific decision. Keep your offerings neutral and free of judgement. Odds are, your friend is already searching and researching and looking for support and resources. Sending additional support in a neutral way will be well received.
Helpful things to say and do after the pregnancy:
- Congratulate the parents. I know this one seems odd. These parents just had their child die. I get it. Congratulations seems like the furthest thing from your mind to say. As a mom of a child that lived for 11 minutes, I felt this odd yearning for congratulations, however. Why? I wanted to celebrate her life. I really appreciated when people took the time to say congratulations on her birth, and then tell me that they were sorry for our loss.
- Send a gift. We have a box full of things that were given to our baby. We received little outfits, blankets, cards, and so much more. We get this box out every so often and look at her things. We talk about her and celebrate our daughter. Most of these things were given to us in the days leading up to her birth, or on the day of her birth and death. One of my most cherished gifts came from a total stranger. She sent this statue of a mother holding her child. I have since sent this to other moms going through this, as it is something I look at daily and find a lot of comfort in.
- Send food. When we came home from the hospital, it was really hard to deal with normal daily things like cooking. A meal train was set up for us, and it was beyond helpful. By the time evening rolled around, I was physically and emotionally drained. Looking back, I can’t fathom going through the grieving process, while having to take care of our older daughter, and still having to deal with cooking. I probably would have been ordering a lot of takeout, or making incredibly simple meals. The meal train was insanely helpful. Just as a side note- we had family in town for a couple of weeks after our daughter’s death. The meal train was held off until they left, and it was still an incredible gift. We had our family’s help for awhile, and then our friends and neighbors stepped up with this meal train as we figured out how to move forward on our own.
- Honor the baby. One of the things that gives my heart so much joy, is knowing that our baby is thought of. Many people chose to plant trees in her honor, light candles, send balloons into the sky, etc. These simple acts left a big impression and I’ll always remember those that took the time to honor our child in such a way.
- Ask if it’s ok to talk about the baby. Again, don’t think you are reminding the parent of their grief if you mention their child. A parent never stops remembering the birth or death of their child, so you bringing it up isn’t hurting anything. Go ahead and ask if they like talking about their child, or like to hear his/her name mentioned, etc. I VERY much appreciate hearing April’s name. It comforts me to know she is not forgotten. Silence and pretending like it didn’t happen is the worst for me. Feel free to just ask the parent how they feel.
When in doubt, just do or say something. I have a list of things to avoid saying at this link if you are nervous. Most people aren’t going to mess it up and have such good intentions! Saying something is better than saying nothing at all. Don’t fall off of the map for your loved one. The worst thing you can do is pretend like nothing happened and fall silent. Just keep the communication open and let your friend know that you are there for them. Again, the fact that you are reading this means you are a fantastic friend and already doing so much. Thank you for being that friend. Thank you for making sure that your friend is supported through this difficult time.
Other links of interest:
Helpful Things to Say to a Parent Walking This Path- Grief & Trisomy 13
The above link outlines helpful things to say, as well as WHAT NOT TO DO OR SAY. I find that to be equally helpful at times!
Our Journey with Trisomy 13 and April Rey
Now I Lay Me Down To Sleep
Find a photographer in your area to take photos of the birth, resources for specific conditions, information for families that have lost their babies, and so much more.