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.

Comforting Moment: The Immortal Infant Child

Author and poet James Henry Leigh Hunt (1784-1859) wrote these words in one of his prose pieces entitled, "The Deaths of Little Children."

Hunt's words offer some comfort to parents during a time of loss:

There are griefs so gentle in their very nature that it would be worse than false heroism to refuse them a tear.

Of this kind are the deaths of infants...

Those who have lost an infant
are never, as it were,
without an infant child.

Their other children grow up to manhood and womanhood, and suffer all the changes of mortality; but this one alone is rendered an immortal child; for death has arrested it with his kindly harshness, and blessed it into an eternal image of youth and innocence.

James Henry Leigh Hunt

Hunt helps parents who have lost an infant realize that it is alright to shed a tear.

He also helps parents to view the death of an infant as having been 'blessed into an eternal image of youth and innocence.' The child who dies as a newborn or an infant forever becomes the immortal child.

Note on the Image: The photographer writes that this Mother and Child sculpture is place at the entrance to Maternity Section in Grey's Hospital, Pietermaritzburg, South Africa.

Hunt, James Henry Leigh. "Deaths Of Little Children, The." Great Literature Online. 1997-2009.

Image: Adam Ciesielski. Mother and Child Sculpture. Royalty Free Use.

How to Respond to a NICU Parent when the Situation Looks Grim

One situation that everyone hopes no NICU parent needs to face is the death of their NICU baby. Unfortunately each year 1,000's of NICU Parents must face the difficult realization that their NICU baby will not be discharged to home; their because their NICU baby is dying.

Every year nearly 30,000 infants die in the United States, many of them are in the Neonatal Intensive Care units (NICU) and Intensive Care Nurseries (ICN).
When a NICU baby dies it is difficult for the family and also for the NICU Team. Knowing what to say to NICU parents when the situation looks grim is helpful for NICU providers, other family members and friends.

Expressing Wishes and Providing Support in Response to Futility
Dr. Timothy Quill and Colleagues looked at the issues of wishes in response to loss and unrealistic hopes as part of the article "I Wish Things Were Different": Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes.

They reiterated the fact that "physicians who care for patients encounter many powerful and painful emotions, including anger, sadness, fear, grief, loss, hopelessness, and blame." Furthermore they pointed out that situations evoking loss, guilt, or hopelessness are particularly hard for physicians to respond to with empathy.

Quill and colleagues pointed out that "offering wishes instead of apologies is a way to convey empathy for the parent coping with the loss. expressing wishes has the power and potential to humanize the medical encounter in some of its most challenging moments."

Offering wishes is particularly helpful "when the emotion is unrealistic hope, loss, futility, or grief that seems overwhelming or otherwise very difficult to address." These are the situations when physicians should consider joining with the patient and family in the expression of a wish that their circumstances were different.

Some of the phrases suggested (or variants) that may be helpful for physicians, NICU providers, family and friends to use and express wishes include:

• I wish things had turned out better for you.
• I wish the news had been different.
• This has been a terrible loss for you. I wish it hadn't turned out this way.
• This is so hard for you. Just when our hopes were so high, for this to happen. I wish it had been otherwise.
• I will work with you to find a way through this.

What Helped You?

Most NICU parents can remember the awful things that people say to them. These leave indelible etchings in our memories.

I would like to encourage visitors to comment on the things people said or the phrases have helped you during your time of loss.

Note: This is a modified version of the article Tips on Offering Comfort to a Grieving NICU Parent published on the Type-A Mom Site in February 2008.

More:
Quill TE. Arnold RM. Platt F. "I Wish Things Were Different": Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes. Ann Intern Med, Oct 2001; 135: 551 - 555.
Dyer K. Coping Strategies Used by Parents to Deal with their Child's Death. NICU Parent Support Blog.
Dyer K. Factors Important to Parents at the End of their Infant's Life. NICU Parent Support Blog.