After The Death of Their Daughter From Dwarfism, A Family Speaks Out About Early Infant Death

Mallory and Dave Holmes were excited. Like many couples, they were eagerly awaiting the birth of their first child. After 20 weeks of pregnancy, however, the couple received news that would shake them to the core. After an ultrasound test, doctors informed the would be parents that their daughter had an uncommon and lethal form of dwarfism. There was nothing they could do. Now the couple is fighting to change the stigma that surrounds the early death of infants. Keep reading to learn more, and follow the original story here for additional details.

When Mallory and Dave found out about their daughter’s condition they also found out there was nothing to stop it. The only choice they had was whether or not to carry the baby to term. They decided they would; they wanted to meet their daughter no matter what. They had fought hard to have her with them. She was born Charlee Clare Holmes on April 29, 2011.

Charlee was born weighing a little more than a pound. Her mother describes her as tiny and beautiful. Tragically, the same day they met their daughter, the Holmes had to say goodbye to her as well. Dave Holmes describes it as “the most depressing joy.” No other words seem to do that time justice, he says.
While many forms of dwarfism are survivable and are not immediately life threatening, Charlee’s came with several unique challenges. Many people living with dwarfism live full and healthy lives. Charlee’s bones, however, were improperly formed. Beyond that, her specific condition occurred such that her lungs were unable to develop properly. Charlee’s condition occurred genetically and was not inherited, but occurred spontaneously. More information on dwarfism can be found here.
Charlee’s condition was rare. Early infant deaths, however, are rather more common. Early neonatal mortality is defined as the death of a child under the age of one week old. In Canada (where the Holmes live) 1,153 neonatal deaths occurred in 2015.

Coming back home after saying goodbye to Charlee was difficult, says Mallory. She finished the nursery she and her husband had planned even though Charlee would never see it. It was a form of coping strategy.

The other difficult part of the process was the lack of people willing to talk to the family about what had happened. Mallory said that when an adult passes away there are a series of acceptable phrases to help bridge the gap. “Sorry for your loss.” “He/she is in a better place.” But when an infant dies or a pregnancy is lost, there is often only silence. Perhaps the greatest tragedy is that by not saying anything, people make the parents feel like they have failed. It’s as if they are responsible for the death of their child.

Despite the fact that parents unfortunately tend to blame themselves, the reality is that in most cases it is completely out of their hands. There’s nothing they could have done. Mallory and Dave fortunately found a bereavement group. Having a place to talk about their experiences helped them to get through the grieving process.

Now the family has had two more children. Keenan and Mackenzie. It was a difficult process for both parents, but they agreed that they had too much love to give. They just couldn’t avoid having children forever. They’ve made sure to teach both of their children that they had a big sister at one point. A sister named Charlee.

Charlee’s legacy, however, doesn’t stop there. In 2017, a charity event known as Charlee’s run began. Charlee’s run began to take on a life of its own. It was in some regards a fundraiser, but in others it grew into an outlet for communities to join together and celebrate the lives of those gone too soon.

Around 400 people attended the first Charlee’s run and over $40,000 were raised. The money helped to completely renovate the Orillia Soldiers’ Memorial Hospital NICU. The event meant so much more for than the money raised. The Holmes family felt that they had accomplished something unprecedented: they gave voices to those who were previously afraid to speak, to those who had experienced loss the same way they had.

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