How to Make Christmas Happy for a Child in the Hospital
To quote the famous holiday song, “It’s beginning to look a lot like Christmas, everywhere you go” — including at the hospital.
Over the years, there were many times I feared my son Cullen would spend his holidays in the hospital because of a pulmonary hypertensive crisis or a post-transplant complication.
I appreciated the efforts by the local children’s hospital to make the season brighter by decking the halls and offering family fun activities, but how joyful would it feel if Cullen were still there on Christmas Day?
Fortunately, we never found out. But every December, I think about the children who will wait for Santa from a hospital bed. What is it like for them?
Forgetting about PH for a moment
I recently asked pulmonary hypertension (PH) mom Kelly Wiegele to share some of her memories from when her daughter Riley was in the hospital over the holidays in 2014. In an email exchange, Kelly said that Christmas was a huge deal for her then 4-year-old Riley, now 11, but she received a devastating PH diagnosis just days before the big day, shattering the family’s plans.
Riley was admitted to the hospital on Dec. 21, 2014 for her first heart catheterization, and was told she would have to stay for two weeks. Her anticipation for Christmas faded to worries that Santa wouldn’t be able to visit her there.
Kelly recalls the mental and emotional toll the PH diagnosis and the approaching holiday took on the family.
“We tried to keep the Christmas spirit the best we could by decorating Riley’s hospital room and doing Christmas-related crafts and activities provided by the hospital,” Kelly recalled.
“Cincinnati Children’s Hospital was amazing. They had a wonderful program called Jingle Bell Junction for all the families who were inpatient during the holidays.”
Kelly said the program provided parents with tickets to “shop” for presents for their child and even have them wrapped.
“It was a very festive event, and for a moment, I almost didn’t feel like I wasn’t living a PH nightmare. I became immersed in the Christmas spirit with amazing people who were just trying to make the holiday brighter for the children!” she wrote.
Kelly credits the event with helping to make their holiday special that year. “Best of all, Riley knew Santa had visited her in the hospital, and seeing her happy was all we needed,” she added.
The Wiegele family did their best that year to make Christmas as festive as possible, and hospital staff knew exactly how to help. Christmas in the hospital wasn’t ideal for anyone, but Kelly said her family was immensely grateful for the heartwarming love and support they got from hospital staff.
Kelly advises other families in the hospital during the holidays to decorate the room to help make it as cheerful as possible.
“If you can, participate in the hospital activities or programs that are available,” Kelly wrote. “Being in the hospital during the holidays is hard, but just a little Christmas spirit can sometimes make things better.”
When Riley was diagnosed, her PH was considered severe, but today she is doing very well. She is stable and on oral medications only.
“This is quite a big change from the diagnosis we received during Christmas of 2014, and we hope it continues to be our reality for quite some time,” Kelly wrote.
Helping one another during holidays
In addition to Kelly’s hospital tips, I would like to remind everyone that PHamily can also help PHamily.
The same year that Riley was diagnosed with PH, Cullen was recovering from a heart and double-lung transplant he received at Lucile Packard Children’s Hospital Stanford in California. We were living in a small studio apartment near the hospital while Cullen’s dad and brother remained at home in Washington. If it hadn’t been for another PH-transplant family, we would have spent Thanksgiving alone. The family welcomed us into their home and reminded us that we could help one another get through the holiday season.
As Christmas approached, we worried whether Cullen would be allowed to travel to celebrate it at home. When he arrived at the clinic one day, a thoughtful Christmas gift from a patient who had transitioned to adult care lifted his spirits. The patient had thoughtfully donated gifts that were more age appropriate for teenagers.
Thrilled with his new earbuds, Cullen relaxed to music for the next few days until he received the happy news that he would be able to go home for Christmas.
All of these family experiences remind me of the phrase, “It takes a village to raise a child.” With the help of family, hospital staff, and others in the PH community, every child can enjoy a merry Christmas.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.