When Magda Bykowska’s five-month-old underwent surgery for congenital heart disease, Bykowska already had a lot of parent stress.
Zoe’s weight had remained low, her condition presented many unknowns, and when the baby pediatrician at her local hospital hesitated, Bykowska turned to a specialist in another city. For Bykowska, the situation was complicated by the fact that Zoe is a twin.
“I worried that I wouldn't be able to spend enough time with either of them. I was afraid that Zoe would be lonely in the hospital by herself.” Meanwhile Zoe’s sister, Evy, who would be cared for by Bykowska’s parents, had recently “begun crying each time I put her down, even if it was to play with her.”
Both twins were also a challenge to breastfeed. “Sometimes the only way to feed them was to do it while walking around with them. Which nurse would have the patience to do that with Zoe?” Bykowska wondered.
But the toughest thing she faced was her inability to “leave either child to go to the other without tears in my eyes.”
More than Twice the Challenge with Two Infant Babies
For parents of twins, a child’s illness or disability presents many complex issues, says Jill MacNiven, president of Twin Hope, Inc. of Cleveland, Ohio.
MacNiven knows this intimately, as she lost both of her twins shortly after delivery as a result of Twin to Twin Transfusion Syndrome (TTTS). The condition, which causes abnormal fetal blood flow, occurs in 5-15 percent of all identical twins, affecting up to 6,000 children each year. It can result in or contribute to premature delivery, infant heart failure, cerebral palsy, or death of one or both twins.
MacNiven founded Twin Hope to educate professionals and the public, increase awareness about twin related diseases, and offer support to parents of multiples with illness or disability.
“These parents are celebrating the life of a healthy child but grieve the loss of a healthy twin,” she says. “They may start to feel happy about the healthy baby but then confused, perplexed, and puzzled at their emotions and feelings for the unhealthy child.”
Twin Hope helps them understand that such feelings are normal and encourages families to seek counseling support, and to connect with parents who have had similar experience.
Parents can also feel overwhelmed as they seek medical care, says MacNiven. “They are steering uncharted courses with the unhealthy child as far as finding the ‘right’ pediatrician, discovering what is possibly wrong with the infant. It might take years to find the scope of the baby’s health problems, and a lot of patience, as well as hard work.”
Like Bykowska, they must also determine how they can care for the affected twin while also parenting the healthy one.
Balancing Adolescent Child Development for Both Twins
When one twin has serious health issues, parents learn about balancing two very different sets of needs, as well as how illness or disability affect all family members.
“Children with disabilities, while every bit as deserving of love, almost always require more time, money, and commitment from parents than non-disabled children. Eventually, disabled children realize this and will need help from their parents to not feel guilty about it,” says Joshua Coleman, Ph.D. of the San Francisco Psychotherapy Research Group, father of ten-year-old twin boys.
Non-disabled children, like parents, feel a lot of guilt, worry, and sorrow that the disabled child may not be able to participate in life in the same ways, he says. “This can cause them to inhibit their own ambitions or expressions of pride and joy. Since there are typically a finite amount of resources available in a family, the non-disabled child is also vulnerable to feeling or being neglected by parents.”
“Children are typically born with different levels of intelligence, sociability, attractiveness, ambition, and sensitivity,” notes Coleman. “Siblings, twins especially, take careful note of the other’s ability and it is not unusual for rivalry or self-esteem issues to arise.” These are often balanced out when children’s contrasting strengths help siblings gain self-esteem from different arenas of competence.
“With a disabled child, these differences are more complicated because all members of the family can feel like the non-disabled child has received a disproportionate amount of gifts,” says Coleman. “Parents and the non-disabled sibling(s) sometimes attempt to compensate for this by giving the disabled child more attention than may be ideal for the family, or less attention to the non-disabled child as an attempt to not call attention to their differences.” Whatever the case, he says, “the disabled child will need empathy from the parents regarding his or her feelings of comparison.”
“Parents need to check in frequently with their children regarding their feelings -- this is equally true of disabled and non-disabled kids,” says Coleman. “Ideally, they develop the kind of relationships where the children confide in the parents and can use them to talk about their feelings.