When four-year-old Alina Siman was waiting for a heart transplant in 2011, she had to stay at Boston Children’s Hospital for a total of five months. Alina had suffered from severe heart failure and was building strength on a Berlin Heart, a mechanical device that temporarily takes over the heart’s pumping functions.
Alina received her new heart on February 28, 2012. Her mother, Mary Jane Siman, shares what she learned about staying positive, active and entertained while you’re stuck in the hospital for a long time.
“These few tips were created with the help of the entire team that worked with Alina: doctors, nurses, social workers and all the great people around her,” says Mary.
Have a schedule.
Mary made Alina a daily schedule so she could look forward to certain activities and the day felt organized and purposeful. She made sure to fit in mother-daughter private time, too. “That’s when we’d have dance parties,” she says.
Create a biography of your child.
Having a biography helped Alina easily answer the questions she was asked repeatedly, especially when a nurse was taking care of her for the first time. (For example: Which finger did the last nurse use for the pulse oximeter? What time do you go to bed?)
If you are spiritual, take advantage of the hospital’s chaplaincy services.
Boston Children’s chaplains honor every journey of faith and are here to assist you in meeting your unique spiritual needs. “It is always helpful to feel peace during the storm,” Mary says.
Don’t neglect education.
Mary arranged for a tutor to visit Alina two or three times a week. During these sessions, Alina would review her colors, numbers and other things that she would have been learning in a normal pre-school program. This helped ensure that Alina was not behind when she re-joined her peers in school.
Alina went for walks around the unit every day. She also rode a bike, played soccer and even built a snowman with her Berlin Heart. “Alina loves to sing and dance and make other people laugh,” her mother adds. “Every day at 5 p.m., she’d take her microphone and put on a show for the nurses. The nurses’ station was right outside our room, and they would all come around to watch.”
Take advantage of the hospital’s inpatient programs.
The hospital cares for the well-being of its patients and parents. Child Life Specialists visit your room (if your child can’t go out) and bring supplies for whatever activities your child feels comfortable with, such as crayons and paper or board games. You can also pick out games and movies from the floor’s playroom, where group activities are also held throughout the week.
Make new friends.
Mary met and grew close to other families on Alina’s unit. “I’m still in touch with them via Facebook,” she says. “You feel attached to them; they become a part of your life, part of your family. We cried and we laughed together.”
Mary and Alina also grew close to the clinical staff, especially the nurses, who made custom jerseys for Alina’s soccer games, and Dr. Christina VanderPluym, the Medical Director for the Mechanical Circulatory Support Program.
“The entire Transplant Team made us feel special,” says Mary. “Christina [VanderPluym] was our angel. She made Alina laugh for the first time when she was hospitalized. She made me realize that life in the hospital can have a little bit of fun. We love her and love to see her, if we can, every time we’re at Boston Children’s.”
Stay tuned for Alina’s story part III: Life after Transplant
Learn more about the Heart Failure/ Heart Transplant Program at Boston Children’s Hospital.