Mother of Boy with SCID Shares Her Tips on Social Distancing

Armené and Michael Kapamajian live in LA. Their son Sasoun was diagnosed with severe combined immunodeficiency (SCID). This means that his immune system is compromised and he is extremely vulnerable to even common illnesses like a cold.

He needed a bone marrow transplant, but until they found a match, Sauson and his mother had to undergo strict isolation. They lived in a 15 by 15 foot hospital room for 3 months. Armené wasn’t able to see her other son and though her husband could visit, they could never touch.

They didn’t even get frequent visits from the nurses, to try to minimize Sasoun’s exposure to bacteria. They were given food and two check ins each day, that was all.

She missed birthdays, Christmas, Valentine’s Day, and more. Armené fell into a depression, faced with the care of a newborn and coping with postpartum recovery on her own. She had to delete social media as seeing the free lives her friends were living only brought her sadness.

She spent a lot of time reading and watching TV and trying to be grateful for health.

Good News!

Finally, they received the news that Sasoun’s two year old brother was a perfect bone marrow match! As they had saved his cord blood, he didn’t even need to undergo a procedure to extract it.

They moved hospitals, were put in a bigger, better lit room, and Armené began to establish a routine for herself.

She admits the isolation put strain on her relationship with her husband. The couple eventually forgot what it was like to be next to each other each day. But after 6 weeks, a successful transplant, and a few more weeks recovery, mom and son were able to return home.

Home Bound

Of course the isolation did not stop there. For one full year the family had to stay in strict quarantine. Everything had to be sterilized. They couldn’t even go on walks or open their windows. Armené missed feeling the fresh breeze.

But nonetheless she was grateful to be back in her own home after months of living in hospitals. She was grateful to be with her husband and both of her children, and felt things were slowly becoming more normal.

They had to make a conscious effort to make up for lost time. They celebrated every holiday extensively and tried to make life feel as normal as possible. The family bought an inflatable bounce house and Armené tried to make home schooling as entertaining as she could. It was tiring.

Her husband Michael was still working and always felt stress about bringing bacteria home. He would deny his children hugs if he hadn’t washed up yet. When he felt he might have a cold, he stayed in a hotel. When he came home, he sprayed lysol on everything.

You can read more about this family’s story here.

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