For many members of the preeclampsia, HELLP syndrome, and eclampsia community, the neonatal intensive care unit (NICU) is a life-changing part of their pregnancy and birth experience. Parents from our community may have a baby in the NICU simply due to the challenges of premature birth due to preeclampsia, or even related to near-term complications caused by the failures of our placenta to help our babies to grow and thrive. No matter what brought your baby to the NICU, you are deserving of compassion and support from your network.

I speak from experience, as one of those NICU parents. I delivered at 35 weeks due to preeclampsia with severe features and signs of intrauterine growth restriction (IUGR) with my first-born child. I had been diagnosed with preeclampsia two weeks prior, but no one warned me it might come with an early delivery. My daughter was in the NICU for fifteen days, needing support through a nasogastric feeding tube and time to grow. Those fifteen days were the longest and most difficult days of my life. Each night that we left the NICU, I left crying the whole drive home, only to cry myself to sleep each night with an empty bassinet next to me. The disconnect between how I pictured my homecoming with my first-born child and what actually happened remains vast and painful.

I didn’t get a lot of support while in the NICU, and I couldn’t find the right words to say “Help me with…” to explain the flood of life-changing emotions. Loved ones probably just didn’t know what they could do, and resorted to just not doing or saying anything at all. I will always be grateful to a friend who brought us a home-cooked meal in the hospital instead of having to resort to takeout or hospital cafeteria food.

Through my work here at the Foundation as well as with my blog “Knock on Motherhood,” I know my experiences are not unique.

Since September is NICU Awareness Month, I asked the members of our Preeclampsia Foundation Community Connection Facebook Group,(https://www.facebook.com/groups/pfcommunityconnection)  “What are some ways you suggest to support parents who experienced preeclampsia, HELLP syndrome, or eclampsia and their baby needed care in the NICU?” Here’s what experienced patients had to share:

1. Recognize and verbally acknowledge the disconnect your loved one is experiencing. Oftentimes, preeclampsia can show up quickly without much time to process what is happening. Your acknowledgement of that disconnect speaks volumes. And if you or someone you know also experienced preeclampsia, let your loved one know that they are not alone.

From our community:

“Honestly I was shocked to end up in the NICU. The transition both into and out of the NICU is abrupt and shocking.” – Renee 

“Connecting with a mom who experienced HELLP, preterm delivery and a NICU stay. I felt like none of my friends understood what I was going through and it was very isolating.” - Bethany

2. Help out with chores, tasks outside the hospital, or watching other children at home. Simple tasks can feel overwhelming, and life doesn’t stop simply because your loved one’s baby is in the NICU. Washing a sink of dishes, walking the dog, feeding the cat, picking up the mail, running a load of laundry, or picking up groceries makes a big difference in the life of a NICU parent. Preeclampsia can occur in any pregnancy, so if your loved one has other kids or even pets, take them for a few hours. In most NICUs, children under the age of 18 are not allowed inside the NICU in order to protect the health of the babies. 

3. Organize a meal train – with consideration for the circumstances. Many times, mom may still be healing from her preeclampsia experience in the hospital or at home, while her partner moves between locations. Check in to find out if a homemade meal or a meal delivery service gift card at the hospital or at home would be helpful, or a series of meals after mom and baby come home – or preferably both! When your baby is in the NICU, it can be difficult to remember to feed yourself or think about picking up groceries. Friends and family dropping off meals can be one of the biggest supports to a NICU parent. Checking in with your loved ones to ensure they have healthy, pre-paid meals keeps their focus where they need it.

From our community:

“Definitely wish we had a meal train and food deliveries. Our daughter only spent 10 days in the NICU but it felt like a nightmare.” – Hayley

4. Remember that dad or partner will likely experience mental health challenges too. Our partners are often the ones “holding it all together”: making all the phone calls to share the news, listening to the medical providers provide detail on two patients’ medical statuses, reassuring and emotionally supporting their partner, arranging for tasks that need to happen at home, and often taking time off from their own work to be physically present. This process is mentally and emotionally draining, and may not hit immediately. From research that our team has done, we know that partners often experience a delay in fully feeling the emotional trauma of the preeclampsia experience. Make sure to check in on them: ask about sleeping, eating, showering, and other self-care that is important for physical well-being. Take shifts to sit at the mom or baby’s bedside to allow for breaks. Offer to make phone calls.

From our community: “I had eclampsia, and my fiance was the one to discover me and call 911. He was there and awake through everything, and there was no support for him. No counseling, group recommendations, nothing.” – Vanessa

Read our article “Not Just Physical: The Psychological Burden of Preeclampsia and HELLP Syndrome” for more information about the emotional and mental impact of the preeclampsia, eclampsia and HELLP syndrome experience.

5. Provide direct financial support for items like gas, hotels, or hospital parking. Preeclampsia and premature delivery may mean that mom delivers at a high-risk hospital far from home that can provide the medical care that she and the baby need. Maternity care deserts exist all across the US and can present an extreme logistical challenge for new parents. This may mean driving hours away from home or work, or even staying at a hotel or temporary living space to be nearer to the hospital. While hospitals or local community resources may be available for help, all parents will likely face some out-of-pocket expenses related to their child’s NICU stay.

6. Provide a pregnancy-validated blood pressure cuff for mom to use at home after delivery. Remember the risk for preeclampsia doesn’t end at delivery. Moms can still develop preeclampsia up to six weeks postpartum. It's important for mom to take her blood pressure at least twice a day, pay attention to her body, and know when to seek medical attention. Often, mothers in the NICU are so focused on their baby’s condition that they may dismiss postpartum warning symptoms. She should be sure to attend her postpartum check-up and report any symptoms 

7. Recognize that some babies are in the NICU for months, and some may never come home. Preeclampsia can occur as early as 20 weeks, and even for babies born nearer to term, challenges and setbacks often occur. It's important to remember that in most cases, mom is being discharged from the hospital without her baby. And many preeclampsia families experience infant loss due to NICU complications. Read our article “How to Show up for a Preeclampsia Parent of Loss” to learn how to support these parents who have tragically lost their baby.

8. Let mom know that she is still her baby’s mom. Many times, parents are unable to hold, feed, comfort, and touch their NICU babies. Encourage her to bond with her baby based on what feels right to her, such as buying her a book to read to baby. Always be willing to listen to her as she talks about the NICU. 

From our community: “Having people tell me that I’m still a mom even without my baby. I felt so weird going out or being in postpartum at the hospital without my baby and everyone else had theirs. Having a baby growing in me for months and then leaving the hospital without him was so hard and having someone validate me and listen to me and remind me that I was still a mom no matter what would’ve also been helpful.” – Amanda

9. Ask her if there is a way you can support her choice of feeding options in partnership with the advice from the NICU staff. Some moms may want to breastfeed or pump, while others may choose to formula feed. A NICU mom does not need any extra guilt, so remember “Fed is best” when it comes to supporting your loved one! If she does want to breastfeed, ask her if you can help drive her to the hospital, help her store her breast milk, or clean and store her pump parts. Help your loved one to visit the NICU so she can attend feedings and bond with her baby.

10. Check in on how mom and baby are doing, but expect that replies may be delayed. Always ask how she is doing and how her baby is doing but don’t expect a text or phone call back. It can be hard to do or think of much else besides how your baby is. Send a text such as “thinking of you today.” Don’t ask if there is anything you can do to help. Send a text to ask for permission such as, “I would love to bring dinner. Can I do that for you today?” or “I am going to the grocery store, what can I pick up for you?” 

As an experienced NICU parent myself, all of these tips from the members of our affected community definitely resonate with me. At the end of the day, please remember to check in regularly and offer concrete, not general, questions to your loved ones about what you can do to help. These actions go a long way to decreasing the isolation and anxiety that the NICU causes for parents. 

For more ideas on how to support a preeclampsia mom, read our article, “6 Ways to to Show Up for the Preeclampsia Mom In Your Life.”