As an extension of our resources and information for family and friends, we’ve gathered important information for our loved ones when we are facing a difficult diagnosis, extreme prematurity, or a need to utilize the NICU.
Before Birth
The consequences of anticipitory grief,
Diagnosis does not equal pain (“suffering from” or “suffering with”), falling in love with baby, learning features.
During Birth
This advice comes directly from a mother and anesthesiologist:
– continue to support the mom, stay where she can see you. Before the baby is born, distraction works great for nerves…as does visualization. But you will know what works best for that woman cos you’ve spent more time with them.
– after the baby is born, if he or she needs help/ resusc, stick to descriptors. Often the mom can’t see the baby or the doctors working on the baby. Someone needs to tell her what is going on. “They have a mask on his face and are squeezing a breathing bag” is good. Comments like, “It’s going to be okay…I think it’s getting better” are not good because they may not be true. Since the parents know and trust you they will hang on your words in a situation like that as if they are gospel. “We’ll get through this together” is also good.
– When things go wrong, when life is touch and go, it’s time to let go of the birth plan (temporarily). Once the ABCs are established and things settle down, the birth plan can be revisited. I don’t mean to be harsh, but items like delayed cord clamping or skin to skin are completely inappropriate when a newborn needs resuscitation. A long discussion afterwards where the health care providers talk about why those wishes couldn’t be honoured in that moment is entirely appropriate (and I would argue, neccessary).
– know your limits. If you find the situation is stressful and emotionally disturbing so that you can’t offer effective support to the parents…bow out. make your apologies, or blame me (ie I need to leave now, I’m in the way of the anesthesiologist taking care of you).
– when you are asked to leave the OR, as will happen if the mom has a critical complication…leave. No questions, no delays.
After Birth
What to Know:
Supporting the family in a way that actually supports them is so very important. Here are a few things that stillbirthday NICU mothers feel are especially important for you to know:
- Divided: A NICU mother’s time is divided. She doesn’t have a moment to spare. When she is in the NICU, she may be feeling guilty for her time away from her other children, and when she is outside of the hospital, she may be feeling enormously guilty for not being with her baby. The NICU is not a vacation, and the experience is not a respite for the mother. It is entirely overwhelming.
- No time to think or even breathe: NICU parents generally desire your well wishes, warm thoughts and/or prayers, but it is insensitive to expect them to return every phone call promptly, or at all.
- Grieving without shame: It is entirely acceptable for the parents to grieve the hopes and the vision they had for their family, while still falling in love with their baby. Trusting that both of these experiences is totally acceptable, and learning how to do both at the same time, can be a very complex, difficult and painful journey, one that the parents might not always feel they are walking well. You validating this to them can help reinforce what their hearts may be longing to hear – that they are still good parents, and that their feelings are validated.
- Postpartum depression & PTSD: the NICU experience can be entirely traumatic for the parent, even with your best help. Because the NICU journey may be less familiar to you than say, postpartum depression (PPD) or post-traumatic stress disorder (PTSD), you might actually consider approaching the NICU experience as though both parents are facing PPD or PTSD. They are in need of support.
- NICU, even for one day, is forever. Taking the baby home out of the NICU is meaningful and important, but it isn’t the end of the journey. Babies may come home with special instructions and equipment. Additionally, parents can face a lifetime of anxiety, dread and fears after their baby has been in the NICU.
What to Do and Say:
- Checking in/Following up: After you have received the news from NICU/special needs parents, do not flood them with questions or opinions. Do not expect them to reach you again immediately. Chances are, they too are still processing the entirety of their new family dynamic and it will take them some unpacking and exploring of feelings. They are, in fact, embarking on a lifelong journey. Here are a few tips for connecting with the family:
-
- Send a text message or short email to one of the parents.
- Tell them you love them. Keep your sentences and your message brief, remembering that their time is very, very limited.
- Tell them that you want to help, and give a couple of ways they can choose from. You can view our list for ideas.
- If it is necessary for you to speak with them directly, the best way to do so is to send them a text message or email first, letting them know with a simple message, something like, “I plan on calling you tomorrow morning at 9am. If you are unable to answer, that is totally OK. I will want to talk about the support you have right now and the feelings you are facing.”
- Suggestions to help:
- homemade oatmeal cookies for mom to keep her breastmilk supply up, as the NICU setting can add additional challenges, such as pumping.
- gas card or money for gas as they travel daily to and from the NICU
- offers to drive the couple back and forth from the NICU (without expectation to enter the NICU), particularly during evening or early morning shifts, as sleep deprivation can reach dangerous levels even without adding the NICU experience into the situation.
- shoveling their driveway or mowing their lawn for them.
- restaurant gift cards or meals they can prepare easily. Remember, they have virtually no time right now. The reality is, they probably cannot receive too many meals during this very stressful stretch of their journey.
- calling or contacting other loved ones to rally support for these or other needs the family may have.
- Meeting baby: Acknowledge the personhood of the baby. Parents appreciate when our children are loved on, and when a diagnosis is involved is no exception. Notice the beauty of the baby, and comment on these things. Let the parents see your joy at their child.
- Photography: NICU photography can seem intimidating but can be an especially important keepsake for the parents. Below are some tips:
-
- Show bonding moments, including firsts for the parents (first holding, first feeding, first bathing, etc.)
- Show comparison. Including the parents’ wedding rings or a teddy bear can show size comparison, and can be included as a before/after size comparison later.
- Capture moments including medical support. The nursing staff love the baby too, and depicting this can be important later, to the parents and to the baby.
- Capture the moments involved with leaving the NICU. Getting baby ready to go home, the car seat, and arriving home all can be very important.
- Check your heart and your limits. There is something you can do or say within your own limits – start with what is within your limits.
What NOT to Do or Say:
- Do not make public announcements on the parents’ behalf unless you have express consent from both parents. This includes making announcements about a diagnosis or anything else related to the baby, and includes making comments or posts on social platforms such as Facebook. You can enlist the loving thoughts and prayers of others without giving away detailed personal information.
- Do not call the parents often. Please refer to our “What TO do” section for guidance on this.
Below is a list of things that real families have been told. All of these are wildly inappropriate:
Do NOT say:
- Didn’t you know something was wrong?
- You brought this upon yourself. You should have stopped with ___ (number of children prior to this baby).
- (in pregnancy) Aren’t you going to abort? Instead: This may be the beginning of a very difficult journey. I want to know what you’re feeling. I want to learn how I can come alongside you during this journey.
- If this is so hard, why didn’t you just abort?
- Retarded. Instead: intellectually disabled.
What to say:
“This may be the beginning of a very difficult journey.
I want to know what you’re feeling.
I want to learn how I can come alongside you during this journey.”
