Grief in the NICU - A New Presentation

Yesterday I had the privileged of presenting the following teleconference as part of the "Managing the Spectrum of Maternal Mental Health Issues from Conception through the Neonatal Experience" at the HHC Perinatal Conference held at Jacobi Medical Center.

I was told that more than 200 Neonatal Providers were present from 11 NICU hospitals.

Grief in the NICU: Identifying, Understanding and Helping Grieving Parents

Being able to give this presentation was particularly fitting because 7 years ago on the 31st was the day that my youngest was transferred to the level IV ICN.

Knowing that I had the ears of NICU personnel from 11 hospitals helps to complete a circle for me...taking our experiences and teaching about them to NICU personnel.

Gift of Life from NICU Loss

Two articles in this month's O Magazine (March 2009) resonated with this former NICU Parent. They explored the issue of Milk Banks and how sometimes the gift of life can come from a NICU Loss.

"If anyone asks tell them we did this out of love for our babies."

Lynn Page

The article on "One Woman's Mission to Save Babies" was a very moving account about one woman's experience with a Milk Bank. Without giving too much away, the story is about Pediatric Psychologist, Lynn Page's experience with donating to Milk Bank following the birth of her premature triplets.

Her story in "O" and available online at Oprah's website, underscores how sometimes good things can come from loss.

O Magazine also took a look at the issue of whether or not Health Insurance will cover Breast Milk "Is Breast Milk Covered by Health Insurance?"

Thoughts on the Issue
I was glad to see the magazine raising these issues. Hopefully something will happen between the increased awareness to change health insurance coverage of this vital 'medicine' made by moms.

Milk Banks in North America

My Master's degree is in part in the field of Immunology, so when the decision whether to breastfeed or bottle feed my daughter's was mine, it was an easy choice to breast feed. I knew then of the benefits that breast feeding would have on their health and in improving their immune system.

When my youngest was in the NICU, I quickly understood the importance of breast milk for a NICU newborn and made the decision to start pumping breast milk while she was in the NICU, at a time, when I wasn't even sure if she would survive the NICU.

Since our day's in the NICU, I have gone on to teach Nutrition and one of the lectures focuses on the process of lactation (breast feeding) and the many benefits of breast milk.

The Human Milk Banking Association of North America
I'd looked into donating to a Milk Bank in 2000 as my older daughter grew older and I was working some and still pumping. The system didn't seem to be in place to make this an easy option. It is good to know that things have changed in nine years, but there is still only one Milk Bank on the West Coast (Mother's Milk Bank in San Jose). There is another one in Canada, the BC Women's Milk Bank.

The Human Milk Banking Association of North America (HMBANA) is a multidisciplinary group of health care providers that promotes, protects, and supports donor milk banking.

The 11 HMBANA member milk banks serve many infants who need milk because of medical conditions such as formula intolerance or feeding issues related to prematurity.

Benefits of Human Breast Milk
The HMBANA website shares some of the many benefits of breast milk in their position paper on the topic. Here is an excerpt:

Human milk is the standard food for infants and young children including premature and sick newborns with rare exceptions. (1,2) Human milk provides optimal nutrition, promotes normal growth and development, and reduces the risk of illness and disease. (3) The unique composition of human milk includes nutrients, enzymes, growth factors, hormones, and immunological and anti- inflammatory properties that have not been duplicated. (4) Exclusive breastfeeding for six months is recommended with introduction of complementary nutritionally adequate foods at about this time. Optimally breast milk remains in the diet for two years and beyond. (1) In situations where mothers' own milk is not available, provision of pasteurized, screened donor milk is the next best option particularly for ill, or high- risk infants. (5)

Read More of "The Value of Human Milk" at the HMBANA's website's Position Papers on Donor Milk Banking.

Sources Referenced:
1. WHO resolution 54.2, May 18, 2001.
2. American Academy of Pediatrics. Breastfeeding and the use of human milk. Pediatrics, 1997; 100: 1035-1038.
3. Picciano, M. F. (2001). Nutrient composition of human milk. Pediatric Clinics of North America, 48. 1, 53-67.
4. Hamosh, M. (2001). Bioactive factors in human milk. Pediatric Clinics of North America, 48. 1, 69-86.
5. WHO/UNICEF Joint statement: meeting on infant and young child feedings. (1980). J Nur Midwife, 25, 31.

What You Can Say or Do for a NICU Parent

When a baby has been admitted to the NICU, family and friends can fear saying or doing the wrong thing so much that they don't do or say anything at all; this is not helpful for a NICU parents who could use support during a difficult time.

Well-meaning friends and family members want to be able to say something that can somehow make it better, or do something that can ease their distress.

Read on to discover some helpful suggestions of what to say and what to do for the parents when a baby gets admitted to the NICU from a parent who's been in the NICU and has also offered advice to other NICU Parents and others facing challenging times.

Say Something to Show Your Support
Pick one of these various suggestions, or modify one so it feels more like something you would say. If finding something to say still doesn't seem to work, then you can let the person know verbally or in writing that you are there for them.

Some of my personal favorites include:

• I am sorry for your loss.
• I wish you didn't have to experience this.
• I am sorry that this happened to you.
• I am thinking of you during this difficult time. (usually written)
• I'm so sorry.
• I wish this hadn't happened to you.
• I wish things had turned out better for you.
• I wish the news had been different.

What can I *say* to a NICU Parent?
People often fear so much saying the wrong thing that they often don't say anything at all. A grieving parent would like to know that family and friends are there to support them during this difficult time of loss.

I think that most of the time words spoken from the heart even if they don't feel perfect will generally be remembered as heart-felt support.

If you aren't sure what to say, you can start by sending a card and letting them know you are thinking about them.

What can I *do* for a NICU Parent?
You may also make specific offers of help to the overwhelmed NICU Parents. Ask:

• What can I do for you?
• How can I help?
• What would be the most helpful for you right now?
  

NICU parents are often in a state of shock, especially initially and have difficulty making simple decisions. Instead of asking what you can do, you may want to make specific offers e.g. picking up other children, bringing food, helping or doing the shopping, calling family members and then have the parents tell you if that is something they need.

What else can I *do* for a NICU Parent?
Two very helpful things you can *do* to support a NICU parent are to listen and to just be.

Listen
One of the most important things you can *do* for a grieving NICU parent is to give him or her your presence. The ability to listen can be a great source of comfort. Listening communicates respect, caring and empathy.

Sometimes all a parent may needs is someone who will truly and emphatically listen to their NICU story. Really listening involves being present for the person, not interrupting and staying connected and focused on what he or she is saying.

Simply Be
Simply sitting and listening to their NICU story, being a witness to their stress and anxiety can help provide invaluable support for a overwhelmed parent.

Invite the NICU parent for a cup of coffee or tea at the hospital cafeteria or nearby coffee shop.

Spending a few quiet moments in silence, holding a hand can be a very effective way to convey your support and caring.

Best Gifts for a NICU Parent
Remember that two of the greatest gifts you can give to a NICU parent are the gift of listening and the gift of your presence.

Do not underestimate the healing presence yourself and of really listening to someone who is going through a difficult experience.

Note: This is a slightly modified version of the article "What to Say or Do for a NICU Parent" published on the Type-A Mom site.

Sources:

• Dyer KA. What can I say when a NICU baby dies? - June 2007.
• Dyer KA. What can I do when a NICU baby dies? - July 2007.
• Dyer KA. Comforting Moment - It's Only Words... June 2007.

Image Sources: Laura Glover. Holding Hands. Matthew Hains. Coffee Shop in Black and White. Pipps Outlet Center. All Royalty Free Use.