Above is Candice with Sara, her daughter Hayden, and me. Candice has HLHS and Hayden has HRHS–together they have a full heart.
Let’s play a game: You just got a diagnosis from a doctor. The first thing you do is what…?
You Google it, of course. We all do. It’s human nature to want to know as much as we can about our circumstance, and, in this day and age, Google is where we turn to scratch that itch.
When I was 13 weeks pregnant with Candice, I found out that she had HLHS. Every time I saw the fetal cardiologist, I would receive more scary news. Because I was so in shock, I couldn’t concentrate on what they were telling me. I would essentially black out–sitting up, eyes open, breathing…just not hearing a word of what they were saying. Inevitably, I would get home and realize I needed to find out more information about what I’d just been told.
I would often turn to the internet to help me on my quest. The problem is, while there is a lot of great information on the internet, there is also a lot of not-so-great information on the internet. Research is essential to helping you cope with a diagnosis–so go ahead and do as much research as you’d like, but learn how to research strategically. And–even though it’s easier said than done–train yourself to take what you read on the internet with a grain of salt.
Be Open With Your Doctor
The best place to do your research is in-person, with your doctor. Don’t be afraid to ask your doctor multiple questions or to let them know when you missed (or simply didn’t understand) a critical piece of information they gave you. They’re seasoned pros–they understand that you’re going to be out of it, confused, shocked. They understand that you may need to call back a day later and get more information. This is all part of the process, and they’ve been through it countless times, so don’t beat yourself up for missing part (or all) of what they said during your initial diagnosis or follow-up appointments.
I had to learn this myself. I was afraid to tell the doctors that I missed what they said. So, instead I mentioned this to a nurse during one of my fetal monitoring checks. She called my cardiologist right away and told him. And, to my surprise, he wasn’t irritated or annoyed–he felt bad and even assumed that my missing the information he gave was an indicator that he wasn’t doing his job properly and wasn’t communicating clearly. He understood completely that my brain had–for lack of a better term–shut off. And he was more than happy to go over everything with me again.
So, don’t be afraid to ask your doctor to repeat something. Don’t be afraid to ask them to slow down so that you can write everything down. Don’t be afraid to request some time to process things. I always recommend asking your doctor to send you an email with key points and critical terms. Having something in writing is essential when you’re going through such a stressful and terrifying time. I also suggest asking if there are books, support groups or community resources they recommend.
Seek Out Support Groups
I looked to Facebook and found support groups for HLHS. Sisters by Heart, a non-profit organization that helps families who have a child with a single ventricle, was a huge help to me from the time I was pregnant with Candice–and they continue to be a huge support system for me to this day. It is. They helped me find people in my area to connect with, which was huge.
Find a Mentor
Everyone needs a friend: what a simple but powerful idea. The best advice I can give to anyone going through a difficult diagnosis or stressful medical time is to simply find someone to support you.
Things to look for when finding a mentor:
- Someone Positive: I can’t stress this enough. Your mentor should exude positivity. You want someone who helps you find happiness in a terrible situation and strength in a scary moment.
- Someone Local: If you can find someone close to you, do. Find someone that can hold your hand at doctors’ appointments, someone who can let your dog out while you’re staying overnight at the hospital, someone who is near enough to help you out when you most need it.
Asking for recommendations is the best way, in my opinion, to find a mentor who’s a great fit. Ask your doctors, nurses or support groups for help. Sisters By Heart had a list of people in my area, and, remarkably, I was able to I find someone on their list who shared a mutual friend with me. Her name was Sara, and she was an absolute Godsend.
Sara has helped me through it all. When I met Sara and her family for the first time, I was about 16 weeks pregnant. I was scared to meet her daughter–I thought I was going to see an unhappy, sick baby, but I was wrong. Hayden was full of smiles and love. Sara showed me pictures of their journey and gave me some great advice. She was there with me the day I had Candice and continues to be by my side, always just a phone call away.
Create What You Need
If there is no support group in your area, start one yourself. Take charge–it’s so empowering in a time when we otherwise feel helpless. I had a hard time when looking for support groups–a lot of people were not in my area, so I would hear stories and get advice that I couldn’t really relate to. So, I started my own Facebook support page when Candice was born–and it was one of the best things I could have done.
The group is for anyone that goes to our local heart center, and I’ve met amazing people through it. When I would meet people in the doctor’s office or at the hospital, I would tell them to join and encourage them to invite others they know. I have also added some people who run our local Children’s Heart Foundation to help with posting about events and information. We are a wonderful support team for each other. I don’t know how I would have made it through this journey without them. And I want to take this moment to say thank you to all of those who have helped me on this journey.