Parenting is rewarding and special, but can be difficult, and at times, bittersweet. But parenting a newborn child facing life-threatening conditions lies another layer of obstacles to tackle, routine of life, and unexpected change.
According to the U.S. News & World Report, there are about three million children in the United States who are considered medically fragile or medically complex.
“These youngsters have daunting health needs that may have been caused by a congenital, genetic or developmental disorder; an accident or traumatic brain injury that left them disabled or paralyzed and wheelchair bound; or a debilitating or chronic illness like cancer. What they share is a dependency on life-sustaining medications, treatments and equipment that assist with the activities of daily living, such as tube feedings, oxygen therapy, suctioning, tracheostomy care, and breathing with the aid of a ventilator.” – U.S. News & World Report.
As a parent, coping with a new diagnosis for your medically fragile child can be stressful and leaving you and your partner feeling scared and alone.
“While parents may initially feel helpless, learning strategies to help themselves and their child cope can bring back a sense of empowerment and composure.” – Texas Children’s Hospital
Positively coping with a new diagnosis can look like:
- Acknowledging that things are changing
- Keeping up with a normal schedule and still finding time to self-reflect
- Exercise. According to Psychology Today, exercising two to three times a week has been found to significantly decrease symptoms of depression
- Seeking support
- Remembering you are not alone!
From support groups to online forums, you are not alone and have an army of medical professionals and community members to help you, as a parent, navigate these changes. Below is a list of medically fragile support groups or shared stories that may help you or someone you love cope with a new diagnosis.
- www.fragilex.org/living-with-fragile-x/newly-diagnosed/
- www.themighty.com/2016/02/when-my-medically-fragile-child-received-a-diagnosis-i-wasnt-prepared-for/
- www.cardinalinnovations.org/Resources/Blog/For-the-Parents-or-Caregivers-of-Medically-Fragile-Children
- www.inclusivechildcare.org/resource-library
The Unforgotten Families (TUF) is the voice, advocate and champion of medically fragile children and their families, with a goal to create awareness of the complex needs and challenges faced by this deserving population. Our hope is that we can help more medically fragile families navigate a new reality not only after a new diagnosis but throughout the longevity of their life.
TUF has a podcast that releases a new episode every other week, and features medically fragile parents, pediatric doctors, community advocates, home health employees, and more. This podcast is a fantastic resource for parents of medically fragile children to listen in on, subscribe, and follow along with the new stories being released a few times a month.
Apple
Spotify
Stitcher
Parents can listen here: https://theunforgottenfamilies.com/podcast-2/
It’s important to note that not one family’s journey is the same and coping with a new diagnosis for your medically fragile child looks different for every parent. Always be patient with not only other parents, but yourself. You are your toughest critic.
For additional resources or questions regarding how The Unforgotten Families can help please email tufinfo@theunforgottenfamilies.com.