Things I Would Say to a Family With a Newly Diagnosed Child
When my first son, Julian, was born in 1996 and diagnosed with severe hemophilia A, I thought my world was ending. I expected to give birth to a healthy baby boy. I never dreamed he’d have a medical condition. I went through the stages of grief: denial, anger, bargaining, depression, and acceptance. It took a long time to cycle through these stages. Eventually, I realized Julian would live a regular life with extra care as needed.
In 1996, not a lot of helpful information was on the internet. It seemed everywhere I turned gave news of doom and gloom. It was frightening. Once I made contact with the local bleeding disorder foundation, I began to feel better. However, the internet can still be scary, and not knowing where to look can cause unnecessary grief.
Following are some things I’d like to tell the families with a loved one who’s newly diagnosed with a bleeding disorder.
- Sometimes a bleeding disorder happens. Often, disorders run in the family, so there’s a slight expectation that they may appear in future generations. Other times there’s no history, and spontaneous mutations happen. It’s no fault of your own.
- Children with hemophilia have a chance to live a life with fewer complications based on new and improved products in the marketplace. Times have changed over the last 20 years, and there are great possibilities for treatment from the early stages of a diagnosis.
- Get connected. Finding a local bleeding disorder foundation is the best way to help a family understand the diagnosis. When meeting others with the same condition, stories from parents and affected individuals can serve as hope for what may or may not be part of a child’s future with hemophilia.
- Do not become a helicopter parent. Parents want to protect their children, but parents of children with chronic illnesses often take protective measures to the extreme. Let your child explore and be a kid. Of course, precautions should be in place, but allow children to discover and get dirty. Parents will find out that sometimes accidents happen regardless of being overly prepared. Preventing bleeds and accidents is not always possible. It’s OK.
- Ask questions. Keep a notebook or a place on your phone with a list of questions to ask the hematologist. Never be afraid to ask questions. It helps a parent to learn more about their child’s disorder. If you hear about a new product or treatment and the doctor hasn’t mentioned it, be the one to bring it up. There’s no such thing as a silly question. Don’t let doubt take over.
I’ve learned so much over the 26 years I’ve raised children with hemophilia. (My youngest, Caeleb, also has hemophilia A.) Sometimes the lessons have come the hard way. Other times I have been proud to have spoken up and asked questions, making caring for my children a team effort with the doctors.
Everyone’s journey is different. Talk to families living with bleeding disorders. They can be some of the most essential resources in raising a child with hemophilia.
Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.
Once they get to the U.S., I will be befriending an Afghan family with a 17 year old boy who has hemophilia. Is there anyone in the community who has come from a third world country to America who can share their experience with me and give me advice?
Treatment for hemophilia, even before the Taliban took over, appears to be similar to treatment here about 30 or 40 years ago. This boy has some very damaged joints and a paralyzed hand. He is always in a lot of pain. Currently he is in bed and cannot walk. The family seldom has enough money to buy factor and the factor there is of poor quality. Last week he bled in his mouth and his dad's blood was given to him, which they said helped. Luckily, he and dad have the same blood type.
Thanks. June Gagnon