Michael and Armené Kapamajian were at home in Los Angeles settling in with their one week old baby, Sasoun, when their doctor called and asked them to come in for a consultation.
According to a recent interview with Popsugar, the couple was told that their baby tested positive for severe combined immunodeficiency (SCID). The disorder is also called Bubble Boy disease.
Michael and Armené were shocked, as their baby looked perfectly normal. Their doctor explained that Sasoun’s immune system was not functioning properly. He was highly vulnerable to viruses and bacteria and must be transferred to a sterile environment immediately. If the baby gets even a simple cold, he could die.
Mother and baby were ordered into strict quarantine in a hospital room so small that there was only room for the baby’s crib and medical equipment. There was no table, so she had to eat in her bed. The room had one small window that looked out onto a parking garage and was permanently locked.
A Stem Cell Transplant Could Save Him
Doctors told the parents that in order to survive, Sasoun must have a bone marrow transplant. They would immediately search for a matched donor, but if Sasoun got even the smallest infection it could be fatal.
Armené said that she could not process the doctor’s instructions. She was numb. Armené could only think that her baby had been on earth for two weeks and now the doctors talked of his dying.
Michael was devastated as well. He was concerned about Armené’s mental health as she was having postpartum hormonal reactions and had been experiencing severe bouts of depression. Michael said he was also worried about their two-year-old son Vaughn who will be unable to see his mother for three months.
Finally, Armené and Michael received the news that a bone marrow donor was located for Sasoun. However, the complete match turned out to be Vaughn. The parents’ immediate response was to express their fears of having their son subjected to invasive bone marrow harvesting under general anesthesia.
Then they remembered that they had saved Vaughn’s cord blood containing stem cells from his umbilical cord after he was born. Arrangements were made for the operation.
Mother and baby were transferred to another hospital for the operation. This was a much-needed change for Armené, who had not been allowed to leave the room and could not visit with her husband or son. Doctors and nurses were told not to enter the room too often. Therefore, she only had visitors twice each day when the doctors were there to examine Sasoun or when her food was delivered.
Although the new room was larger and had several windows, the staff had set up a larger crib for Sasoun. Armené found herself trying to sleep in an uncomfortable pullout chair.
To make things even more difficult, Armené was not there for Vaughn’s birthday or for Christmas with Vaughn, Michael, and her family. Social media and television did not help as it only reminded her of her isolation.
Armené felt that she was not capable of putting up a brave front. She did not want to hear people offering sympathy. She felt people were going to say that things would turn out OK when no one knew if they would.
Michael’s life was turned upside down also. In addition to his busy practice as an ophthalmologist, Michael and his mother took care of Vaughn. Michael took over all medical decisions for Sasoun. He spent every free minute analyzing updates sent out by Sasoun’s doctors.
His only interaction with Armené was to recycle her clothes several times a week. Michael tried to shield Armené from much of the medical updates, telling her only what he felt she could handle. The strain showed in their relationship and they were not fully reconciled until Armené and Sasoun came home.
The Operation Was a Success
It had been six weeks since Armené and Sasoun had begun isolation. The transplant went ahead as scheduled and the doctors said everything looked promising.
Several weeks of testing followed. After a total of fifteen weeks in isolation, the doctors announced it would be safe to bring Sasoun home. But they cautioned that the family must continue living in quarantine and maintain a strict, sterile environment.
Living in A Bubble
Armené’s first thoughts were how she will not miss the bland hospital walls or the medical equipment. She had a bed again. She had glasses and silverware and plates. But most of all, she had her family.
Michael commented that one thing he noticed was that Armené and Sasoun ‘came first’ while he and Vaughn were in ‘second place’. He said he was not being critical, but that was the way it was.
Armené made every effort to create a family unit. They were so truly overjoyed with their new life that they celebrated even the smallest daily victories.
Yet it was inevitable that the excitement of their new life would fade into normalcy. As Armené points out, it was not normal. Their friends and family were not allowed in the house so they waved and smiled through the windows. The children were not allowed outside. Vaughn could not play with other children. It gradually dawned on Armené that her children were not leading normal lives.
Having Sasoun home put even more restrictions on Vaughn. He could not go to school or play group sports. If Vaughn got sick it would put Sasoun at risk.
But it turned out to be Michael who got sick. He immediately rented a hotel room and stayed there until his health returned.
When he got home, he slept in the guest room. He sprayed Lysol not only in the bedroom, but he actually backed out of the house spraying as he moved along.
Michael was Sasoun’s major threat to his health because he had to work. When he got home from work or from errands, he had to make his way through a strict decontamination process.
Many times, after going through the entire procedure, he realized that he had one more errand. Then he had to duplicate the process just an hour or so later upon his return.
Michael and Three-year-old Vaughn
Vaughn seemed to understand most of what was happening, but at the age of three he had not understood Michael’s decontamination process. He would run to the door for a hug.
It was difficult for Michael to turn him away. However, in a week Vaughn had learned to wait until Michael had cleaned up and put on fresh clothes.
A Little Creativity Helps
Armené, who had been a grade school teacher, was worried about Vaughn’s emotional and social development.
They bought Vaughn a Little Tikes bounce house almost the size of their living room to give him space to run and play. She created a school day by putting on his backpack and kissing him goodbye.
Vaughn would walk out of the kitchen and into the living room where Armené would greet him and pretend to be his teacher for the day. Vaughn loved the play acting and would call his mom ‘Mrs. K.”
A 90 Degree Return to Normalcy
Finally, Sasoun’s blood tests showed that his immune system had improved to the extent that he could withstand a slight infection in one occurred.
The relieved parents allowed a few friends and relatives to visit occasionally after confirming that they had not been sick for the past week and that they would follow protocol. It had been twenty-eight months since they had begun isolation.
Second Time In Isolation
When it looked like the coronavirus was taking hold, Armené began to go into isolation mode even before the mandatory stay-at-home rules were announced.
Being experienced at stocking food supplies did not prevent her from being angry at having to put her life on hold and having to put her children through isolation again.
Michael helped by reminding her that they will be OK because they know more than most people about how to cope with isolation.
Armené began filming videos that she posted on Facebook giving tips on the proper way to self-isolate.
Michael is writing a book describing their experience, hoping that it may help other families manage the ordeal of long-term isolation. Both parents feel that perhaps the reason they had to bear this burden was to be able to help and console others during the pandemic.
