Sunday, July 20, 2014

Ellery - Rainbow Baby Session - Grand Rapids Michigan Newborn Photographer

Beautiful Ellery was the first baby I was blessed to photograph as part of my rainbow baby sessions. She was lovingly welcomed by her parents and by two big brothers already in heaven. Below is the McPheeter's story of loss and love in Heidi's words.

My prayer is that in sharing these stories hearts would be touched and that others who have endured loss will know they are not alone and there are people who understand and will love you through it.

I am so happy to introduce you to Ellery <3

“Is this your first child?”  We’ve been asked this again and again throughout our pregnancy this year.  Depending on the person asking the question and the situation, we have typically found it easier to just reply with “Yes,” as our honest response typically makes others uncomfortable while it can also be difficult to succinctly explain our complex pregnancy history.  The honest response though is that this is our third child and that we lost our first two sons to a birth defect called a Congenital Diaphragmatic Hernia, or CDH, a defect that my husband, Scott, and I have no family medical history of, while the cause of this defect is unknown.  

We were introduced to this awful birth defect in September of 2011 at the 20-week ultrasound with our first son, Callum.  We were told that he had 50/50 odds of surviving and when he arrived full-term on January 31, 2012, he entered the world ready to fight.  His CDH was severe in the sense that he completely lacked a diaphragm, which meant that while in the womb his organs in his abdominal cavity herniated into his chest cavity, which inhibited his lungs from developing.   Upon birth, he was placed on ECMO (a heart/lung bypass machine) in the NICU with the hopes that it would buy him time for his lungs to develop, however babies can only be placed on ECMO for a limited period of time before complications arise from the artificial support.  Callum endured numerous procedures but unfortunately his lack of lung development and hypertension tragically took his life on February 18.  Our hearts were broken.

Amidst our grief, we searched for further insight from genetic counselors and were told that there were 1-2% odds of CDH recurrence in future pregnancies.  In November of 2012, we found out that we were pregnant with our second child.  We were excited but anxious.  The pregnancy was not treated as “high risk” as there was very little concern for CDH reoccurrence, however in March of 2013 at 19 weeks of our pregnancy we tragically lost our second son, Holden, to CDH.  Holden had the same level of severity of CDH as Callum.  We were devastated.

We are supporting a research study on the genetic cause of CDH through Harvard, and now that we were amongst a small group of “CDH recurrence families,” we sought guidance from the researchers and conducted additional genetic tests but were left with no answers.  We were left with the assumption that CDH is most likely an autosomal recessive genetic condition where given our history of recurrence, there is a 25% percent chance that a child will have CDH in a future pregnancy.   Those odds were difficult to make sense of as our boys had already been on the losing side of such slim odds.  We wrestled with whether we’d attempt to have additional biological children- could we endure more heartache?  Is it fair to put another child through what Callum had been through?

In the early fall of 2013, due to a slight blunder, we suspected that we were possibly pregnant with our third child.  We were forced to confront all of our fears of potentially enduring more heartache only to confirm a few weeks later that we were not pregnant.  However considering we had already prepared our hearts for another pregnancy, we then made the decision to try again for baby #3, and at the end of October, we discovered that we were pregnant.  We were initially treated as “high risk” and by the time we had a 17-week ultrasound in January 2014, we confirmed that we were having a daughter and that she had a diaphragm, her organs were in the correct place, and that she was healthy.  I wish that I could say that all fear and anxiety dissipated at that time, but it lingered throughout the remainder of the pregnancy.  The morning of her scheduled c-section, I was overcome with anxiety, terrified that something had been overlooked and that something would be wrong…. but then at 7:48 a.m. on June 19, Scott and I heard music to our ears- we heard our daughter Ellery cry, something that Callum was unable to do.  Scott and I were overjoyed as we welcomed this healthy bundle of love into this world.

Ellery is the child we weren’t sure we would ever have and we are deeply grateful to have her.  While we can never understand why babies die of birth defects, rather than dwell on the “why,” our hope is that we can rest in the grace and love that we have experienced despite and amidst our losses, in the strength that Callum demonstrated, and in the joy in the gift of our precious Ellery.