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How to cope when you receive a scary medical diagnosis for your child

For most parents, even the common cold can feel like a scary sickness in young children—let alone the prospect of complicated or invasive surgery. As a pediatric plastic and craniofacial surgeon in New York for the last decade, I specialize in congenital craniofacial conditions as well as facial trauma in children and adults.

My role is not only to perform the operation itself, but I'm also serving as a guide, counselor and confidante, to the families of the patients that I treat. While we all hope that no child will ever have to undergo a serious medical procedure or be diagnosed with something scary, the reality is that these situations do happen. But rest assured, news of a diagnosis can often times feel more overwhelming and scarier than it needs to be.

With the right education, support and a handful of questions in your pocket, you can prepare yourself for what's to come and help everyone around you handle the emotions and journey ahead.

Here are my fundamental tips that can help parents who are dealing with a child's scary diagnosis.

1. Educate yourself.

One of the scariest aspects of receiving a diagnosis is not understanding exactly what it means, which often leads to thinking the worst. I always try to focus on education first and foremost with my patients and their parents, so they understand what the condition is and how it occurred (whether it's a hereditary condition or otherwise).

Here are some basic questions to discuss with your child's doctor:

  • What are the treatment options?
  • What does the timeline for treatment look like?
  • What will the recovery entail?
  • What should I expect for my child's development post-treatment?

Parents should be encouraged to ask questions and ask for literature on the condition. I also give patients the option of looking at before-and-after photos. I find that this can be extremely helpful and reassures parents that the condition is, in fact, treatable.

I always let them know that my door is always open so it's important to find a healthcare professional who offers that support and knowledge. The more you know, the better equipped you will be to deal with the diagnosis. Education is power.

2. Find a doctor you're comfortable with.

It's essential that you find a doctor or medical provider you feel comfortable with and trust. I often work with parents before their babies even come into the world, and then for years after the baby is born, so it's critical that we have a positive relationship built on empathy, trust and compassion.

Look for a provider who is open to answering questions, is available (even if it's just a quick question on the phone), and can put you at ease. This includes offering you the time you and your child may need. If you're comfortable doing so, talk to other parents for doctor recommendations and speak to a few different doctors before settling on one.

I always encourage doing research online as well. There are many review sites for medical providers out there, such as RateMDs, Healthgrades, Vitals and even looking at reviews on Google.

3. Have an open dialogue with your inner circle.

Sharing the news about your child's condition with your family can be a difficult conversation to have, especially on an emotional level. It can be tempting to keep your child's diagnosis to yourself, however, I fully encourage parents to share their child's diagnosis with those close to them.

Bringing grandparents and other family members into the conversation—and perhaps even bringing them along to an appointment—helps them to better understand the condition and helps you to build a support system for yourself and your child as you go through the process.

4. Seek out support groups.

With friends and family on our social networks constantly sharing news and updates about their healthy children, it can feel isolating and lonely to be a parent of a child with a health condition. But remember, you're not alone.

Craniosynostosis cases, for example, affect 1 in 2,000 children and are rather common, yet not discussed very openly in the media or among parents. The same is true with many other conditions. For this reason, I suggest you ask your doctor to put you in touch with other parents who have gone through similar experiences.

These fellow parents can help you see the light at the end of the tunnel and may be able to answer questions along the way. I also suggest online forums, blogs, and other digital resources where you can connect with other parents. Understanding how common these conditions are and seeing these people come out the other side and showing them how successful these surgeries are, can go a very long way in putting you at ease.

While a diagnosis of any kind is a scary thing to go through, finding a doctor you trust, asking the right questions and connecting with others can help make this difficult time a lot easier.

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