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Which advice would you give to someone who has just been diagnosed with Beckwith-Wiedemann Syndrome?
See some advice from people with experience in Beckwith-Wiedemann Syndrome to people who have just been diagnosed with Beckwith-Wiedemann Syndrome
More than likely a newly diagnosed patient is an infant or child. My advice for parents is to take a deep breath. This isn't your fault. I can't promise everything will be picture perfect, but, the odds are strongly in your favor. Life expectancy is high and modern medicine is wonderful.
Sometimes BWS newborns need a more interventions at birth. Deep breaths, one day at a time. Remember to also take care of yourself and be good to You. NICU stays are stressful and exhausting, but no matter what I promise you'll get through it.
Pay close attention to doctors, and take notes often. Write down questions to ask, because I promise you that you'll have dozens. Chances are once you see a specific specialist, you will forget what you wished to ask.
Reach out to others with BWS or who have family members who have it. Finding others to connect with is helpful in easing fears. You may also be able to find others in your area and get recommendations on specialists.
The important thing to remember is that on average, you or your loved one will be absolutely fine.
Sometimes BWS newborns need a more interventions at birth. Deep breaths, one day at a time. Remember to also take care of yourself and be good to You. NICU stays are stressful and exhausting, but no matter what I promise you'll get through it.
Pay close attention to doctors, and take notes often. Write down questions to ask, because I promise you that you'll have dozens. Chances are once you see a specific specialist, you will forget what you wished to ask.
Reach out to others with BWS or who have family members who have it. Finding others to connect with is helpful in easing fears. You may also be able to find others in your area and get recommendations on specialists.
The important thing to remember is that on average, you or your loved one will be absolutely fine.
Posted May 19, 2017 by Megan 1220
Do lots of research, it is not at all a death sentence, reach out to as many specialists to find out if it’s sporadic or hereditary. Make sure you follow all of the screenings so nothing is missed to have a successful outcome
Posted Jan 20, 2020 by DMSmith 1550
