By Kim Buettner and Judy Taylor, RN

Five minutes ago they were fighting over the last piece of cake threatening never to talk to each other again. Now, they are sitting on the floor in the older one’s bedroom planning their weekend adventure. The relationship between siblings can sometimes be complicated for any family. The intervention of a chronic illness however, may bring about additional concerns as well as joys for both the siblings and the parents.

Tiffany Antisen was born 12 years ago with a multitude of conditions including a heart condition, a club foot, spina bifida and multicystic dysplastic kidneys. Tiffany was the Antisen’s second child and her older brother, Mathew, had to learn a few extra skills about taking care of his new “baby sister.”

For reasons unknown, Tiffany’s multicystic dysplastic kidneys did not form properly in the early stages of fetal development, and at three months of age, she was on peritoneal dialysis. Tiffany’s parents, Peter and Marisa Antisen, were not only faced with the initial shock of having a child with long-term disabilities, but they also had to make sure Mathew, who was three years old, did not feel jealous or ignored.

“It was such a shock when we found out about Tiffany’s condition. Our first child was healthy, we weren’t expecting this. We also wanted to make sure Mathew did not feel left out. Our nurse, Judy Taylor, was very helpful with ideas to keep Mathew involved,” said Marisa Antisen.

When Peter and Marisa performed the four daily peritoneal exchanges, Mathew was encouraged to participate. He learned how to assist his parents with performing exchanges, helped his mother clean up after an exchange and even understood the importance of wearing a mask during the connect and disconnect stages.

After a period of time, Tiffany was switched from peritoneal dialysis to hemodialysis. Three times a week, Marisa would take Tiffany to the hospital for her treatment. Mathew also accompanied and learned about the hemodialysis machine and Tiffany’s need for it. Mathew became well known for his skills of helping the nurses entertain Tiffany during the treatments.

As the Antisen’s did with Mathew, it is important to give explanation to siblings on a level they can understand and, to some degree, allow them, as well as the patients, to participate in the care. This helps prevent resentment of the affected child. However, parents must guard against giving too much responsibility or too significant a responsibility to either child which might result in guilty feelings if something goes wrong.

After less than a year of hemodialysis, Tiffany was changed to continuous cycling peritoneal dialysis (CCPD). Her parents found it easier to use CCPD. Tiffany’s exchanges were performed with the assistance of a machine while she slept during the night. After a year and a half of CCPD, Tiffany received a cadaveric kidney which failed after only five weeks. In 1989 however, she received a second transplant and has not experienced any complications.

Near the time of Tiffany’s transplant, Peter and Marisa had a third child, Kristina. As opposed to Mathew, Kristina grew up with Tiffany’s kidney condition and has not known what it would be like without kidney disease in the family. She understands the disease and knows that Tiffany has a transplant. Kristina, now eight years old, is protective of Tiffany and makes sure her friends do not come over to the house if they are sick because of Tiffany’s lowered immune system. The two of them have a close sister relationship and enjoy spending time together playing board games, swimming or singing. This close relationship is important for the development of both children. While the demands of chronic illness care cannot always be understood by a younger sibling, who may think all families are like her own, watching treatment procedures and spending fun time with the affected sibling helps to promote understanding and acceptance.

Often a sibling, younger or older, may exhibit negative behaviors for attention – as if to say, “Look at me, I’m still here, what do I have to do to get your attention?” How much to tell a sibling and when to tell should be individualized and on-going. Careful perception by concerned parents can determine readiness. Play therapy, with dolls or medical toys, may help teach a child about illness and care as well as give an opportunity to express feelings and Mathew, Tiffany and Kristina have adapted well to a situation that many families do not have to encounter. Mathew, age 15, is a freshman in high school and has set his sights on a career in the medical field. His parents relate this to the influence Tiffany, and her care, has had on his life. He volunteers time at a retirement home and is considering an internship with a radiologist at an area hospital.

Tiffany, now 12 years old and in the sixth grade, enjoys going to school and is proud she has made straight A’s this year. When Tiffany was on hemodialysis, she received one-on-one tutoring from the nurses. Marisa believes that this fact may have helped Tiffany excel in her school studies. Tiffany has dreams of working in a doctor’s office or teaching physically impaired students.

Kristina is in the second grade and is home schooled. She is not sure what she wants to be when she grows up. She is a typical eight year old who enjoys watching movies and playing with her dog, Minnie. She says that sometimes she is bored when Tiffany is not at home with her.

Patience, love and understanding are three important factors when raising children no matter what the circumstances. When one of the children has a chronic illness it is still very important to provide a nurturing environment to all the children.  Each child is an individual with special needs, and without careful understanding and attention from parents, the healthier children may feel unimportant or secondary. This can be detrimental to developing self-esteem. Even though it may be difficult, planning special time and events with the other children alone reassures them of their importance and can help work out negative or guilt feelings toward the sibling with chronic illness.

Tiffany is fortunate in many ways. Her loving and supportive family has contributed to her positive self-esteem. By her parents setting limits and having rules that she must obey, she is becoming a very responsible child. Her parents have not allowed her to use her illness to “get by with things,” but have expectations of her just as of Mathew and Kristina. Hats off to the courageous parents of a child with chronic illness.

KimBuettner is the Associate Director for AAKP. Judy Taylor, RN is a transplant coordinator for the University of South Florida Pediatric Nephrology Department in Tampa, FL.

This article originally appeared in the Summer 1997 issue of aakpRENALIFE, Vol.13, No. 1.