Saturday, July 4, 2009

Now I Lay Me Down To Sleep

July 1 was Canada's 142nd birthday. Many people were out celebrating our national holiday, but there was one Calgary family who spent their Canada Day in hospital, mourning the loss of their stillborn son. Baby R had been diagnosed with Trisomy 18, a condition caused by a chromosomal defect, and he also had major heart defects.

As a volunteer photographer for the "Now I Lay Me Down To Sleep" foundation, I had the opportunity to be with Baby R's parents & family and to photograph their precious son, brother, grandchild, and nephew.

My thoughts and prayers are with Baby R's family as they journey through their loss of this beautiful child.

About "Now I Lay Me Down To Sleep"

Pregnancy and birth are miraculous journeys. This amazing time of life is full of mystery, anticipation, joy, hope, and wonder. Feeling the powerful energy of birth and new life, watching as a new family is born unto each other. These things humble and amaze. These are the things that we celebrate when a baby is born.

Pregnancy: The state of being with child. [British Medical Dictionary] The beginning of a parent's hopes and dreams. The anticipation of the pitter patter of tiny little feet. A family being born unto each other. No parent ever expects their dream to shatter. But sadly, sometimes this dream can turn into a nightmare.

Each year nearly 3.3 million babies are stillborn, and more than 4 million others die within 28 days of coming into the world. [World Health Organization] With advanced medical technology, it is a parents expectation that those born unto us will outlive us. When a baby dies, it is outside the natural order of life and families are left devastated and forever changed, and a world is turned upside down. There is confusion, sadness, fear, and uncertainty that cannot be explained. There is sorrow where there should have been joy. During this time, it might be impossible for families to know what they might need in order to heal in the future.

This is the place where the Now I Lay Me Down to Sleep Foundation gently provides a helping hand and a healing heart. For families overcome by grief and pain, the idea of photographing their baby may not immediately occur to them. Offering gentle and beautiful photography services in a compassionate and sensitive manner is the heart of this organization. The soft, gentle heirloom photographs of these beautiful babies are an important part of the healing process. They allow families to honor and cherish their babies, and share the spirits of their lives.

Every living being instinctually knows how to grieve. It is learning how to heal, that some need help with. Offering gentle and beautiful photography services in a compassionate and sensitive manner is the heart of the Now I Lay Me Down to Sleep Foundation.

Remembrance Photography is a very important step in this healing process. Photographs are one of the most precious and tangible mementos that a parent can have, showing the love and bond that was given and shared with their baby. These portraits will last for generations, and will honor and remember a tiny life that is forever loved and cherished.

The Now I Lay Me Down to Sleep Foundation (NILMDTS) administers a network of almost 7,000 volunteer photographers in the United States and twenty-five countries. At a family's request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session. The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby.

Our entire network of affiliated photographers graciously donate their time and talents to our families and we are proud to be able to offer our services at no cost. Your Donations are greatly needed and greatly appreciated.

Please consider supporting the mission of NILMDTS

All proceeds from donations to the Now I Lay Me Down to Sleep Foundation support our current programs, the day to day operations of our headquarters and the continued education of our affiliated volunteer photographers. We are a non-profit organization and could not survive without the kind generosity of donors like you.

Your donations are greatly appreciated. Please consider supporting our mission by making a donation TODAY to NILMDTS.

"Now I Lay Me Down To Sleep" Foundation: www.nowilaymedowntosleep.org

Baby R had Trisomy 18, one of several forms of Trisomy, a condition caused by an extra chromosomal defect.

As a Registered Nurse & as a volunteer photographer for NILMDTS, I want to play my part in making the public aware of Trisomy 18.

What Is Trisomy 18?

Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births.

Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.

At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.

What causes Trisomy 18?
At conception, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with a set of 46 chromosomes in each cell. A trisomy occurs when a baby has three #18 chromosomes instead of the normal two. This is something that happens at conception. And although many parents worry about this, it is important to know that
parents have done nothing before or during pregnancy to cause this disorder in their child.

What are the characteristics of Trisomy 18?
The genetic material from the extra eighteenth chromosome can cause a variety of problems with varying severity. Just as children with Down syndrome can range from mildly to severely affected, the same is true for children with Trisomy 18. This means that there is no hard and fast rule about what Trisomy 18 will mean for your child. However, statistics show that there is a high mortality rate for children with Trisomy 18 before or shortly after birth.

Typical characteristics of Trisomy 18 include:

  • Heart defects:
    • VSD (Ventricular Septal Defect): a hole between the lower chambers
    • ASD (Atrial Septal Defect): a hole between the upper chambers
    • Coarctation of the aorta: a narrowing of the exit vessel from the heart
  • Kidney problems
  • Part of the intestinal tract is outside the stomach (omphalocele)
  • The esophagus doesn’t connect to the stomach (esophageal artesia)
  • Excess amniotic fluid (polyhydramnios)
  • Clenched hands
  • Pocket of fluid on the brain (choroid plexus cysts)
  • Rocker bottom feet
  • Delayed growth
  • Small jaw (mycrognathia)
  • Small head (microcephaly)
  • Low-set ears
  • Strawberry-shaped head
  • Severe developmental delays
  • Umbilical or inguinal hernia
www.trisomy18.org


To make a donation to the Trisomy 18 Foundation, please call 810-867-4211.



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