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5 Things I Wish I Was Told After My Child's Rare Diagnosis

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I often think about what I wish others had told me after my child’s rare diagnosis, since it can be such a confusing, life-altering time in life. Although my list is centered around persistent fetal vasculature (PFV), this applies to many rare conditions. These are the five things I wish someone told me when my child was diagnosed:

1. It will be OK.

Although this was said to us by medical professionals, it helps to hear it from other parents in the same position you are in. Eventually, I did get to hear and see other children with PFV and how they are thriving. It would have been wonderful to have that from the very beginning. Trying to find a community took a little while, but once I found other PFV Parents, the doors opened wide on this. I was able to see kids of all ages with PFV – everything from playing sports, learning to walk and eventually getting their driver’s license! These children were, and are thriving. So, let me be the first parent to tell you, it will be OK.

2. You have not “failed” your child.

There is nothing that you directly did to cause this condition. In the majority of cases, the cause is unknown. Even if the cause is genetic, which is rare, it is still nothing that you can control. Do not blame yourself. Your job as your child’s advocate is just beginning. You cannot think that you did something to cause this, because simply we do not know. Focus the energy you would use for worry or wondering, on making sure that your little one is getting the best care possible. You are now the biggest advocate your child has.

3. If needed, do get a second, third, or fourth opinion.

If you are not comfortable with the initial diagnosis, do some research and get another opinion — or even a few other opinions. There may be options for treatment that a more experienced ophthalmologist knows that another does not. This is an uncommon condition. Not every ophthalmologist has seen this in person. Reach out to other PFV Parents and get recommendations. Ultimately, you need to not only be comfortable with your child’s doctor, but also with their recommended treatment. If you feel there may be another option for treatment, by all means, get another opinion. Even if you still get the same recommended treatment, it may help you feel more comfortable with it.

4. See what resources your child may qualify for.

While we looked into Medicaid, we never thought to look into what other resources we may qualify for. Most states have physical therapy resources, and in some states, your child’s vision issues automatically qualify them for these services. It never hurts to ask and see what resources are available to you and your child.

5. Where to go for support.

It took over two months for us to find parenting groups that were specifically for PHPV/PFV. We were able to find groups around children with ocular prosthetics almost immediately, but it took more time to find other PFV Parents. Check social media as well as everywhere else online. You never know what or who you may find.

What do you wish that you had been told at the moment of your child’s diagnosis?

This story originally appeared on PFV Kids Blog

Originally published: December 11, 2018
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