I'm looking for

Patient Stories

Pediatric Hospice Allowed Baby Jordan to Live His Life to the Fullest

Pediatric Program Provides Comfort to Patients

Jenna and Paul Clapp of North Reading were high school sweet-hearts who had long talked about their desire to marry and start a family when they were young. At 26, their dreams came true, and on September 14, 2013, their son Jordan was born with a full head of hair, big brown eyes and seemingly perfect in every way.

At his one-month checkup, his pediatrician noticed that he had hypotonia (low muscle tone) and suggested some exercises they could do to help strengthen his muscles. "This was our first baby, so we had no idea that anything was wrong," said Jenna. At the two-month checkup, he showed small signs of improvement, but the doctor was still concerned and referred them to a neurologist at Tufts Floating Hospital for Children. The specialist diagnosed Jordan with Spinal Muscular Atrophy Type 1 (SMA), a genetic disease that causes wasting of the body’s muscles and functions, including breathing and swallowing, like ALS. It is the leading genetic cause of infant death.

Reeling from the news that their baby only had months to live, Jenna and Paul vowed to make his life as comfortable and joyful as it could be. "Since there is no cure and he was not going to get better, we wanted him home with us," said Paul. "He wasn’t going back to the hospital, so we chose Care Dimensions to help us care for him at home."

From the start, the Care Dimensions pediatric team, led by Tamara Vesel, M.D., a nationally recognized pediatrician specializing in hospice and palliative care, helped Jenna and Paul talk through their goals for Jordan’s care. "His comfort was paramount over our feelings of wanting to keep him here and alive with us. We didn’t want to do anything that would cause more suffering," said Jenna. "We wanted to be clear and grounded in our decisions, so there would be no guilt or regrets later."

"Whenever he had a medical crisis or we had to make a decision about more medical intervention like putting in a feeding tube, Dr. Vesel would walk us through it, discuss both options and then let us decide," explained Jenna. "Having the team’s support is a big reason why we were able to stay true to our original plan."

Jenna and Paul were determined to make Jordan’s life as normal as possible, so they took him for walks, played with him in the snow, had pictures taken with Santa and celebrated the holidays with family. "We did the best we could and gave him the most fulfilling life he could have with the help of our hospice team," said Paul. "That time was so precious. He came and went so quickly, it seems like the greatest dream," added Jenna.

In February, when he was five months old, Jordan developed an ear infection and Dr. Vesel warned that the infection could be too much for his little body to fight off even with antibiotics and morphine to control his pain. After a week, his lungs were failing, but his brain and heart kept fighting. "Dr. Vesel and our nurse Lisa Carey were with us on his last day, explaining what was happening and what to expect next. In the end, he had a very peaceful death, free from pain and in our arms," said Paul.

Additional Stories

Years Later, Appreciation Remains for Compassionate Care at Kaplan

For Diana Reintges, it has been nearly a decade since her longtime partner Bobby Seibel was on hospice. While her journey was filled with times of sadness, the support she received still resonates with her today.

Read more

Family Matters: Devoted Siblings Thankful for Mom’s Hospice Care

A grateful family appreciates the dignity and support that their mother received during nine months of hospice care at home.

Read more

Peace & Comfort at Care Dimensions Hospice House for US Navy Veteran and Family

The Care Dimensions Hospice House is a peaceful place offering 24/7 clinical support for the patient. That allows families to spend quality time with their loved one.

Read more

Anyone—patient, family, care provider—can make a referral. Fill in the form online or call us today.

Since 1978, Care Dimensions, formerly Hospice of the North Shore,  has provided comprehensive and compassionate care for individuals and families dealing with life-threatening illnesses. As the non-profit leader in advanced illness care, we offer services in over 100 communities in Massachusetts.

Copyright 2024 | Care Dimensions, 75 Sylvan Street, Suite B-102, Danvers, MA 01923 | 888-283-1722 | 978-774-7566

Privacy | Terms of Use

We use cookies and other tools to enhance your experience on our website and to analyze our web traffic. For more information about these cookies and the data collected, please refer to our Privacy Policy. Accept