Harlow’s story: Life-changing moments

When Crystal Ossello arrived at the MultiCare Deaconess Hospital labor and delivery unit for her scheduled cesarean section, she walked into a room decorated in celebration of her daughter’s birthday.

As the only baby born that day on the floor, Harlow had everyone’s attention regardless of how different her life looked.

Ossello was 12 weeks pregnant when Harlow was diagnosed with anencephaly — a fatal and untreatable birth defect that occurs when the neural tube fails to close, preventing portions of the brain and/or skull from developing. At that point, Ossello had already lost Harlow’s twin brother to trisomy 18 — a severe genetic disorder caused by an extra copy of chromosome 18.

Amniotic fluid had deteriorated Harlow’s brain, and it was unclear how severe the defect would be at birth or how much time they would have with her, Ossello explains.

The day Harlow was born, though, was magical, she says. Harlow spent those 15 hours surrounded by family and visitors, receiving constant love and attention, and hospital staff reminded everyone it was OK to celebrate her life.

“Her life is important, just different,” Ossello says.

Life-changing moments

After Harlow’s death, the family was given the option of using a CuddleCot to spend more time together before she was taken to the funeral home.

The cooling bassinet provides continuous temperature management to extend the time families have with their infant after death, explains Anissa McCrum, Deaconess Hospital mother-baby unit nurse manager. It gives them time to bond, make memories or have visitors.

“Each grieving parent has their own length of time they want to bond with their baby after they pass,” McCrum says. “It could be half a day or a few days, depending on their needs. The CuddleCot keeps their bodies in better condition … and allows them more time to say special goodbyes.”

For Ossello, those three days with Harlow in the CuddleCot were life-changing.

“It was an amazing opportunity to spend more time with her. We were able to do molds of her feet and hands, read her a book and have family stop by.”

“It was an amazing opportunity to spend more time with her. We were able to do molds of her feet and hands, read her a book and have family stop by,” Ossello says. “Looking back, it was amazing that we were gifted those opportunities with the CuddleCot. It provided us with so many memories that we wouldn’t have otherwise.”

Months later, after Ossello returned to work at the Deaconess Hospital front desk, McCrum reached out to her about an opening as a health unit coordinator in the mother-baby unit.

“I wanted to find a way to give back, something that would be meaningful,” Ossello says.

She knew it was meant to be.

Giving back in Harlow’s honor

Working in the same unit where she lost her daughter can be hard at times, but Ossello says she feels comforted being in the same place where Harlow’s life was.

When she finds herself setting up the room she had with Harlow for another patient, it’s briefly bittersweet, she says. But then she remembers why she’s there and how special it is to be part of another family’s story.

“I planned her life as much as I could and now it’s nice to be here, giving back,” Ossello says. “We know that you can’t always fix something or bring someone back, but we can help someone’s memories with their child.”

Ossello has spoken at the Resolve Through Sharing class for nurses who may care for a mother experiencing a loss, and she sometimes also meets with mothers going through loss. She focuses on listening to them, finding ways to meet their unique needs and making sure they know their options, including the CuddleCot.

Even if all she can do for someone is remember their child’s name, she knows how big of an impact that can have. Until you lose a child, you don’t realize the significant power behind hearing or seeing your child’s name, she explains.

“Crystal (Ossello) has a heart of gold,” McCrum says. “She has a perspective that so few people have. From her experience, I value her opinion so much for things she suggests for families in similar situations.”

Recently, Ossello organized a fundraiser to purchase a second CuddleCot for the hospital, ensuring that every family who wants it has the option — especially in case of a malfunction or multiple deaths. The new CuddleCot was recently delivered and will be ready when needed by a family.

Support, however you need it

Not everyone will want the CuddleCot, McCrum adds, so staff focus on multiple ways to support families.

It all comes down to concentrating on what mom wants or needs, she says.

“We try not to give the nurse assigned to that family other patients, so they can focus just on them. We give the patient a large room so they can have a lot of family visit if they want; we do skin-to-skin as much as time allows and talk to them about donating or suppressing their milk,” McCrum explains. “But we take it as fast or slow as they want. And our social worker is heavily involved for follow-up plans and things like funeral home arrangements.”

No matter how your time in the Deaconess mother-baby unit looks, this team is here to support you, Ossello says.

“We know that you can’t always fix something or bring someone back, but we can help someone’s memories with their child.”

“It’s an honor to give back when the opportunity arises by being a resource to other families that are walking a similar journey,” she adds. “It’s so important to me that they have the education they need to make a decision … and that they feel supported, however that looks for them.”

Each year for Harlow’s birthday, Ossello brings cupcakes for the team and they celebrate together. She hugs the nurse who stood watch outside her room that first night, and they talk about the unique ways people connect on such a deep level over something like this.

The two became close friends and were excited when they found out they were pregnant with similar due dates, Ossello says. They ended up having their babies on the same day earlier this year, in the same unit where Harlow was born.

“Harlow’s life was at Deaconess. She passed in the mom-baby unit, and I’m forever grateful for the bonds I shared with that team, and now I’m part of it, too,” Ossello says. “Her life brought me such joy and sorrow at the same time. I truly feel she brought me back to this unit to help others. It’s all because of her that I am lucky to be part of this team!”