"This week we remember all babies born sleeping, or whom we have carried but never met, or those we have held but could not take home, or the ones that came home but didn't stay. Make this your profile status if you or someone you know has suffered the loss of a baby. The majority won't do it, because unlike cancer, baby loss is still a taboo subject. Break the silence. In memory of all lost angels. ♥"

~ Source Unknown

Have you ever seen this status on Facebook?  (To give credit where credit is due, I also paraphrased the quote on today's landing page from a quote I found on the page for a miscarriage group on facebook - see the Resource List for a link to the group.)

We had planned to end Breastfeeding Awareness Month with a post from Coach Bruss...look for that on Friday.  In the meantime, since I am punting and this subject of baby loss has touched me in some form three times in the last few weeks, I thought I would share some additional resources and offer some new insights I have gained thanks to other people being generous with their stories of overcoming adversity.

It is especially hard to write about this as we are now in our 34th week of pregnancy.  I take comfort in the fact that pregnancy and infant loss is very rare.  Most of us will have healthy, term babies who go on to live full lives well into their adulthood.  I have read that the chance of pregnancy or perinatal loss is less than one percent. 

So how do you deal with that loss if you are among that so small percentage of people who lose their precious child when the rest of the world is rejoicing at birth?  Inevitably their is someone with an infant or nursing their baby when you are in public.  How do you live without breaking down every time you leave your home? 

If you are in this devastating situation, I hope and pray that some of the information that follows helps you manage day by day as you come to terms with your loss.  If you are a friend or support person for a family that has experienced loss, please share what might be appropriate for their situation and maybe some of these resources can serve you, too.

You are usually presented with two choices in these situations:  you can carry the pregnancy to term and possibly face a loss at the beginning of life or very likely within the first few years of life; or you can terminate the pregnancy before you get much further in gestational life.

I saw one mom who commemorated her experience with a pregnancy photo session.  She and her partner had already chosen a name for their baby.  She found an artist who painted her pregnant belly with her baby’s name and an image of her son wearing angel wings.  No matter what her outcome, she will always have those beautiful artistic photos of a very special time in her life that she shared with her living, unborn son.

I heard one of the most profound and touching birth stories I have heard to-date at a meeting I attended recently.  A mom shared that everything was going well until...and then the next thing they know, their baby is gone.  She and her husband had time to hold their baby, which she said was so very special and precious.  They have grieved and continue to grieve together.  At the same time, they have decided to focus on the positive.  Both of them believe that this baby’s birth and death have a purpose and they are accepting of it and loving their child every day by talking about her within the family and when the opportunity presents itself, sharing her story. 

The family has made a gift of her short life already.  As this mother is an organ donor, it made sense to her to donate her baby’s organs - they are now providing the gift of life for children who had bleak futures until they received her organs.  The mother is also donating her milk - she says that she thinks of her baby in heaven every time she pumps and she finds that thought comforting.  She has been faithful in pumping since the loss and she has been donating her milk to a friend of hers who adopted a baby.  This adopted baby had a brain that was incomplete at birth due to the birth mother’s drug use.  Since that baby switched from formula to breast milk, her scans have shown an increase in her brain mass and she is starting to hit developmental milestones.  What an amazing legacy for a little girl who never breathed in her parents arms and whose time on earth was so very short.

This family also grieved by spreading her ashes at memorial events in their home states with their extended family.  As I listened to the story and watched this mom speak, I was moved by her faith and the journey she has taken in the last few weeks.  She has taken a situation of utter despair and turned it into one of love and sharing.

There are two women here in Arizona who through their own experiences identified a need for perinatal hospice care.  They met at a MISS support group meeting and realized that they could serve others through their own experiences, and thus came the idea for providing hospice services tailored to families who were dealing with the imminent loss of their infants. 

They support families by coordinating between the medical community and the family, they offer anticipatory grief education & emotional support, they help with the creation of birth and death plan, help organize memory making/keepsakes, and offer individualized childbirth education and professional doula services to make the most of the baby's birth experience.

Here are some of their stated goals:

*To help families emotionally prepare for birth and death by creating a circle of support around them

* To help families understand their babies diagnosis and the probable outcome

* To help families make decisions based on the love they have for their baby

* To assist families in cherishing the time between diagnosis and birth/death

To see a complete list of their goals, services and the hospice care they are offering, click on the CARE link below.

There is also a book that I learned of recently that may be helpful if you know of someone who might be experiencing the loss of a newborn:

by Amy Kuebelbeck and Deborah L. Davis, Ph.D.

I can only hope and pray that everything goes well with our birth and that we will be blessed with a healthy, whole child who will grow up to be a vibrant, giving and whole adult.  If for some reason that is not the plan for any of our children, I hope and pray that I will find comfort in some degree in such a manner as these families have demonstrated.

Blessings to all.

Comfort and Resource Enhancement, or CARE, Program

Upon referral from perinatologist, The MISS Foundation's Perinatal Palliative C.A.R.E.S. Program provides support to families facing poor prenatal diagnoses.

Perinatal Hospice and Pallative Care

Resource website for families and caregivers that lists books, resources and hospice programs on a countrywide basis.

Angel Baby - Miscarriage and loss

Arizona Perinatal Loss Bereavement Resource

Banner Desert Medical Center

1400 S. Dobson Road, Mesa, 85202

480-512-3595

Provides a network of support for those experiencing a pregnancy or infant loss. This resource gives parents a statewide network of support, current bereavement literature on a variety of topics, educational opportunities and resources in the community, state and national level.

The Compassionate Friends

The Compassionate Friends assists families toward the positive resolution of grief following the death of a child at any age and to provide information to help others be supportive.   They offer a safe place for bereaved parents, grandparents, and siblings to meet and talk freely about your child and your grief issues.

M.I.S.S. Foundation

The M.I.S.S. Foundation provides immediate and ongoing support to grieving families through community volunteerism opportunities, public policy and legislative education and programs to reduce infant and toddler death through research and education.

M.E.N.D. Mother's Enduring Neonatal Death

M.E.N.D. (Mommies Enduring Neonatal Death) is a Christian, non-profit organization that reaches out to families who have suffered the loss of a baby through miscarriage, stillbirth, or early infant death.

HAND Helping After Neonatal Death

HAND is a resource network of parents, professionals, and supportive volunteers that offers a variety of services throughout Northern California and the Central Valley.

SHARE Share Pregnancy and Infant Loss Support, Inc

The mission of Share Pregnancy and Infant Loss Support, Inc. is to serve those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth, or in the first few months of life.

Now I Lay Me Down To Sleep

They offer the free gift of professional portraiture and remembrance photography to parents suffering the loss of a baby.  “The NILMDTS Foundation is there for parents and families to help aid them in their Healing, bring Hope to their future, and Honor their child.  It is through Remembrance that a family can truly begin to heal.”  They feel that these images serve as an important step in the family’s healing process by honoring their child’s legacy.

Placenta Encapsulation – Wendy Diaz, PBi™ PES

Encapsulation services are free for bereaving mothers.  Wendy will also add herbs to the capsules that help dry up the milk supply.

Recommended Reading:

by Deborah L. Davis, Ph.D.

by Amy Kuebelbeck and Deborah L. Davis, Ph.D.