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Home Away from Home

Malkie Schulman

When a child is born with serious medical issues, sometimes parents must make the excruciating decision to move him into a long-term care facility. A glimpse into the process

Wednesday, June 07, 2017

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CHANGING ROLES When a mother has a child (or two) living in a residence, her role as mother shifts. After all, what defines a mother? When she’s no longer the primary caretaker, when for most of the week she’s not the one in charge of the child’s wellbeing, suddenly her role has to be redefined

M eira refused to look at it. But she knew the dossier was there, lying on her kitchen table in black and white. The results of the sonogram; a rare genetic disease called Edwards syndrome, a chromosomal condition associated with abnormalities in many parts of the body. Of course, the doctors weren’t positive of their findings. It could all be a huge mistake.

Only it wasn’t. Months later, in the delivery ward, the doctor’s suspicions were confirmed: Meira’s newborn daughter, Chaya, had Edwards syndrome and all the defects the doctors had enumerated. Chaya would require 24/7 care and need to be hooked up to multiple machines, including a respirator and heart monitor, for the duration of her life. Her life expectancy was one week to a year; she lived for six years.

“When I was pregnant, I spoke to a few of my family members about the possible findings,” Meira shares. “Some of them were pushing me not to hook the baby up to a respirator at birth. They told me and my husband that it was halachically permissible,” says Meira. In fact, Meira’s husband had been told by his rabbi that if the baby were born with this syndrome, it was their decision in the minutes after birth whether or not to connect her to the life-sustaining machines. [Obviously, in dealing with such weighty issues, each case is specific to its circumstances, and one must confer with a rav who is expert on both the medical facts and the halachah —Ed.]

“I couldn’t do it,” admits Meira. “I couldn’t let her die knowing it was through our sanction that she did.” Unfortunately, Meira had many reasons to doubt their decision over the next few years.

“Chaya’s deformed little body never grew beyond baby size. Whenever I saw her in intense pain — she had heart failure, kidney failure, and constant infections — I’d mercilessly berate myself for choosing to keep her alive to suffer this way.”

“In the blissful days of Yoni’s babyhood, before severe autism reared its ugly head, I knew he would eventually take leave of me — under his chuppah. I didn’t anticipate that our parting would take place when he was still a young child”

Initially Meira and her husband made the decision to keep the baby at home. “I couldn’t imagine sending a child of mine away, no matter how compromised she was and how much time it would take up to care for her.” Together with her husband, Meira found an agency that provided 18 hours a day of in-home nursing care. She and her husband divided the other six hours a day.

“We did it for two years,” Meira says. “Chaya was rushed to the hospital every other week.” There were also almost-daily emergencies that they were able to resolve at home.

“I was so emotionally involved with the baby that I’d forget to pick up my 13-year-old from play practice. Many nights I was so exhausted I forgot to make supper,” Meira relays. But it was not until she found her seven-year-old daughter throwing large objects at her doll and stomping on her face that she realized how much her five other children were being emotionally abandoned. “I knew then that, as painful a decision as it was, we would have to place our baby in a high-level care facility.”

Out-Of-Home Care
When a child is beset by medical issues, sometimes the wisest idea is to move him from his parents’ home into an appropriate care facility. Parents usually understand this intellectually. But emotionally, placing a child in a group home or other residence is indescribably excruciating — even when the evidence to support the decision is overwhelming.

During the entire intake process for registering her 17-year-old son into a group home, Adina wept. “I couldn’t stop the tears. Even though I was convinced it was the right move, there’s that niggling doubt that whispers that a child should always live with his parents,” shares Adina, whose 175-pound son is afflicted with severe cerebral palsy plus multiple other medical conditions. “The first two years that my son was away, I was racked with guilt. What kind of mother am I? How could I send my child away from home?”

Guilt is often the first and biggest hurdle parents must overcome before making the decision to place their child in a care facility. The pervasive feeling of guilt can be so all-consuming that parents aren’t able to objectively size up the situation and determine if keeping their disabled child at home is the best option — for the child himself, for the parents, or for the other siblings.

“Children with major mental and physical disabilities take a huge toll on family life,” says Judy, a caregiver in the Women’s League women’s home in Boro Park. “How many ways can parents split themselves?”

The challenge is even greater when you’re dealing with not one disabled child, but two. Mazal’s two-year-old twin girls were born with a rare genetic chromosomal disorder that left them severely medically compromised. For the first year, Mazal and her husband kept the twins at home.

“We have four older children, the oldest is ten,” says Mazal. “My bechor recently said to me, ‘Remember when the twins were home and the Pulsox [a device that measures oxygen saturation of arterial blood] kept ringing like crazy?’ He got stressed out every time the monitor beeped, which happened on a constant basis. My eight-year-old developed a tic from it.”

After a taxing year, Mazal and her husband consulted with their rabbi about the twins’ future care — ultimately deciding to place them in a facility. “We felt we needed to do this to retain the integrity of the rest of our family while still providing the best care possible for the twins,” Mazal says.

Logistically, there are many impediments to providing proper medical care for a disabled child at home.

“Most parents simply don’t have the facilities to care for their severely disabled youngsters,” says Rivky Polansky, supervisor at Women’s League group home for disabled young women in Brooklyn. “Even if their children are higher functioning, the need for 24-hour care often remains. As the children get older, it also becomes harder to lift them. They have special needs for showering and require ramps to maneuver them in and out of buildings.”

There’s also the prohibitive cost of caring for a severely disabled child at home, a topic people rarely wish to mention, but must be considered. Can the parents obtain the extensive and often expensive medical equipment that their child requires? Are they able to afford in-home nursing care?

“State help is rarely available full-time unless the child is in a residence,” Judy points out. “Parents need to try to be objective as possible when making this important decision. It’s best to make the decision with a knowledgeable third party.”

For Rita, it was mainly her severely autistic daughter’s age that caused her and her husband to seek institutionalization. In New York, she says, there are wonderful day programs for children up to the age of 21. Not only do these programs have enriching curricula, but they provide safe environments for young adults. That all stops when the child is 21 and still living at home.

Rita’s daughter’s 21st birthday came at an especially stressful time: “I was working to support my family because my husband had been laid off. But my husband wasn’t home — he was out all day actively looking for employment. Who would watch my daughter and keep her safe?” (Excerpted from Family First, Issue 545)

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