Support group lets parents know they are not alone

Of the tragedies a parent can endure, perhaps none is more heart wrenching than the loss of a child. Something two nurses from IU Health Arnett know too well. In September 2020, they teamed up to lead a support group called Open Arms Miscarriage and Infant Loss.

There is no set agenda. Both start by sharing their stories of loss.

Jen Hittle, BSN, RN and CNML manager of Corporate Affairs & Risk Management for the West Central Region for IU Health, lost her son, Brenton at six months and five days. He was in the care of his sitter, napping on his stomach when he stopped breathing. They found nothing wrong with Brenton. The cause of death was determined as Sudden Infant Death Syndrome (SIDS).

Sarah Norkus, a nurse and manager of surgery administration, struggled with infertility then gave birth to twin boys at 19 weeks, Evan Walter and Elliot Rey passed away about an hour later in her arms.

Neither nurse is a trained grief counselor. They are not preachy. They just share their thoughts and emotions – fear, doubt, regret and even guilt.

“Our goal is to provide support - to give parents hope that they will get through it,” said Hittle. “Before something like this happens you empathize with people, but when it actually happens, it’s so awful you can’t put it into words. You feel sick, guilty and crazy. One day you’re fine - not crying - and the next day you’re a hot mess.”

“Most of what is discussed would sound crazy if you have not had this experience. People often have the best of intentions, but their comments are not always helpful,” shared Norkus. “It is strange when you must comfort others due to your loss.”

Some topics might include the finances involved with a death, which can be overwhelming. There is the cost of a funeral, possible heroic measures, care in the NICU. When an infant dies you might receive invoices for services many months after the fact – a constant reminder of the loss. There is the fight with insurance because the infant was never issued an insurance card. There are hoops with Medicaid because a social security card has never been issued. The mail keeps coming despite the cycles of grief.

At home there are cribs, strollers, clothing and diapers waiting in anticipation. What do you do with them? A mother’s milk may come in. A post-partum visit has already been scheduled. Do you cancel or go? There is no guidebook or manual to help navigate the loss.

How do you celebrate, birthdays, anniversaries, Mother’s and Father’s Day?

What about other children at home? How do you answer the question, how many kids do you have? Norkus admits the answer depends on who is asking and the relationship.

Then there might be guilt for having other children after the loss. “Did you just replace them.”

At a recent gathering in October, in honor of infant loss awareness, members were asked to bring memories – handprints, blankets, etc. One participant brought her pregnancy test because it was all she had.

One member shared, “I always feel guilty because I have other children and it appears that I don’t think about him. This group is my time to think and reflect.”

The conversations are organic. Nothing is off limits. The goal is to let parents know that they are not alone.

The support group has been more successful than Norkus thought possible. Attendance has been steady with referrals from all over. The support group has an average attendance of eleven. Recently more fathers have been joining the group and there is discussion of starting a dad’s group.

“Men don’t usually talk a lot but there is a feeling of what about me. This is my loss too,” explained Norkus.

The support group meets on the first Wednesday of each month from 6 – 8 pm in the physician’s lounge of the IU Health Arnett Medical office located at 2600 Greenbush Street, Lafayette.