International Pregnancy and Infant Loss Remembrance Day 2011

There is nothing as joyous for parents and families as celebrating a new birth and watching a child grow to maturity.  For Carolyn and Jarad, when preparing for their own joyful time, having their unborn baby diagnosed with a serious illness after a routine scan was unexpected and frightening.

Carolyn was thirty weeks pregnant when her baby was diagnosed with Multicystic Kidney Disease on the left kidney, rendering the kidney useless.  Whilst this was unusual, a specialist advised their baby could survive with one kidney, however four weeks later another scan showed Bilateral Multicystic Kidney Disease.  Carolyn and Jarad were told their baby would go into renal failure at birth and there was nothing they could do.

Heartfelt is a volunteer organisation of professional photographers from all over Australia, dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature and ill infants and children in the Neonatal Care Units of their local hospitals, as well as children with serious and terminal illnesses.  In these difficult and sad times, parents often don’t consider the importance of documenting the moments of the closeness of family, or capturing the details of a child until it is too late.  Heartfelt is dedicated to providing this gift to families in a caring, compassionate manner.

Amanda Cowan has worked as a nurse in the Neonatal Intensive Care Unit at Brisbane’s Mater Mother’s Hospital for the past eight years.  “We are always striving to provide quality, compassionate care to our families.  Never did I imagine the rewards that would be gained in sharing Heartfelt’s service.  Being involved in creating beautiful, loving memories during an otherwise heartbreaking time is the greatest gift.  Since working with Heartfelt, we have been able to offer their services to many families.  The appreciation and gratitude the families have shared in return has been humbling.”

On the morning of 21st October 2010, Sara met with Amanda to prepare to photograph the birth and special moments of Carolyn and Jarad’s baby.  Caitlin Grace was born by caesarian section at thirty-seven weeks after a final scan had suggested a slightly different pathology of the right kidney.

“Documenting a little person being delivered into the world is humbling and awe inspiring.  To photograph Caitlin’s birth and hear her gasp and cry for the first time was spine-tingling,” Sara recalls.

Caitlin managed on her own for a short while before she went into respiratory distress requiring ventilation.   The surgeons had several attempts to repair her right kidney, which was showing some function, however were not optimistic about the outcome.

After five weeks in the NICU, the new little family was sent home with an uncertain future.  Caitlin has proved to be a fighter, however, and has gone from strength to strength.  She has ten doses of medication a day and regular appointments with many specialist teams.  Caitlin still has a long road ahead and will need a transplant eventually.  To look at her, you would never know she had such a poor prognosis.

“The weeks leading up to her birth and the weeks in the NICU are a blur,” says Carolyn.  “We are thankful we have such a wonderful friend in Sara, who volunteered, as part of Heartfelt, to document our day and provide us with lasting memories.  I still can’t look at the pictures without shedding a tear, perhaps for what might have been, but thankfully wasn’t.  She is our miracle baby.”

A lot of Heartfelt stories don’t have such happy endings.  Many of the families Heartfelt photographers meet have already lost their baby or their baby or child is so seriously ill, their family is unlikely to ever be able to take them home.  “The loss of a child,” says Amanda Cowan, “is one of the most challenging times for parents and the staff who care for them.  With only a few days or moments with their precious child, the importance of capturing these memories is a precious gift for the future.”

As preparations for Caitlin’s first birthday proceed, there are many other families who will be spending October thinking about and celebrating the short lives of their baby.  Saturday 15th October is International Pregnancy and Infant Loss Remembrance Day.  Across the world memorial services, balloon releases and lighting Waves of Light at 7pm take place in honour and as a sign of remembrance for lost children.

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My thoughts and prayers are with all the Heartfelt families and everyone else who has experienced the loss of their child or children.
xx S.



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