When we got our CHD diagnosis I had no idea what to do first. None. I hate Dr.Google and did not let myself or my husband Google our diagnosis until we had seen the specialist for confirmation. I didn’t want to spend the weekend reading horror stories and get myself worked up for something that wasn’t a 100% certainty.
When we did start Googling, honestly, I didn’t find much that was exceptionally helpful. I wish I had come across some sort of resource that had given me some instruction! I just wanted someone to tell me exactly what to do!
While we were in the hospital I realized that with this platform I could create exactly what I wished I would’ve had just 12 short months ago! So here we are.
I polled some fellow heart momma friends on what their reactions were when they got their CHD diagnosis. I also asked them to share with me what, if anything, they would have done differently knowing what they know now. Here are their responses.
Every. single. answer. began with this word. Most said “ugly cry”. So go on, CRY! Grieve for days if you need to. The news you were just handed is life changing and there are so many unknowns. It’s okay to scream, it’s okay to be angry, it’s okay if you need to punch a pillow or throw something (just please don’t hurt yourself or the baby!).
Brandie said- “Lots of ugly crying. Lots of praying. Lots of researching, even when we shouldn’t. Lots of trips to Texas Children’s (we aren’t from Houston). A lot of guilt and feeling like it was my fault. “I’m 24, in good health, I had a normal pregnancy with my firstborn, why does this happen?” It’s something I had zero control over but struggled with. Now that we have had time to process, a lot of those negative and sad feelings have gone away. Having a great support system really helps!”
Mandi said- “Worst day ever. The only appointment I had ever gone to alone. Panicked. Denial. Should not have driven home, could not see through the tears. Prayed. Reality set in. Gave it to God. The rest was a blur. I’d say accept help. Prepare and plan the best you can. Accept reality.”
Jaime said- “We cried. And gave ourselves time to mourn the loss of what we thought was losing all resemblance of a normal life. And we talked about worst case scenarios. And cried some more. Then we went into crisis management mode - make the appointments, do the research, check with insurance, rinse and repeat. And slowly we started to adjust to the new normal.”
Educate yourself as soon as possible. In the beginning, I remember feeling so overwhelmed and thinking that I would never be able to understand it all. It’s a lot to take in at once, no matter what your diagnosis. The more you can research and learn before your baby is born, the better all around. Research your specific diagnosis but also hospitals and surgeons. Schedule tours, talk to cardiologists, schedule a meeting with a surgeon or two if you can!
Emilia said- “Once diagnosed do your homework search for the top surgeon, hospitals, what the survival rate at that hospital is, how many deaths as well, as hard as that question is. get second or third opinions if necessary. join groups like these that can help you get information as well as be supportive”
Tiffany said- “Alway go to a ranked facility!!!! If they act like your defect isn't a big deal, run away!!”
Isabel said- “I went to google and started researching his defect and the best places for his OHS etc. and then started working on getting him to a doctor at TCH (we live in Nicaragua). I cried and prayed so much through all of it.”
Holy cow, insurance can get complicated quickly. Get on the phone with your insurance provider and get a case manager as soon as possible. This is the person who will follow you and your child. They can help you understand what is and is not covered, deductibles, co-pays, etc. etc. etc. They are your go-to for any and every insurance question. Also, every time you speak with your case manager you should write down the date and time you spoke along with notes from the conversation and any important names or phone numbers they give you. You will be glad you have this documentation, trust me!
There is absolutely nothing wrong with getting a second opinion! This is a HUGE, life-changing diagnosis and both you and your baby deserve to have the correct diagnosis as soon as possible!
Shelbie said “At the first facility we were sent to after we found out initially about a possible vsd, we got the full-blown diagnosis and the prognosis was extremely grim. Like multiple doctors told us to terminate. We obviously got a second opinion—at TCH. I think that’s something many people don’t realize they can do, is go somewhere else, see another doctor. The diagnosis did NOT change, it was actually worse..but the plan of care and quality of care did. I was pregnant when we found out, so we had time to plan. I could see how it would be overwhelming if you suddenly found out as soon as your child is born or shortly after. But a second opinion and research of facilities are worth it. For most of our kids, they have 1 shot at a successful surgery, and it’s the difference between life and death, so go to the best place possible. “
Rebecca said “We decided that clearly, our ultrasound tech was incompetent, then, of course, started googling while waiting for our referral visit. After our follow up with a specialist, we were given two options, both TCH. We were told Dallas was closer but does far fewer surgeries than Houston, so we agreed then and there to go to Houston. While we waited for our appointment with TCH I googled again and told myself maybe so far two ultrasound techs were incompetent lol. Side note we didn't get a correct diagnosis until we got to TCH and they made us feel very hopeful about Ragnar's outcome.”
Find a Support Group
Thank God for social media, am I right!? Facebook alone brings people all over the world together and with Facebook groups, we can join groups like TCH Heart Families or the HLHS Facebook group and we don’t feel so alone on this journey. I didn’t join any of these groups right away and that is one of my regrets. These Heart Families have the knowledge, experience, and an abundance of empathy and compassion because…. they know, they get it. And to be honest, until you’re living it, you don’t know… you don’t get it. You can’t.
Shelbie said “I also didn’t have Facebook at the time Case (HW) was born and felt extremely isolated. Not many of my friends had kids and I wish I would have known or thought to look for support or groups like this one.”
Sarah said “No way we can do this alone.”
Pad Your Savings Account
Even if you have the most fabulous insurance on the planet you are going to need some extra funds… soon! Hospital expenses add up quickly, plus there will be travel expenses, and in most cases, families who have to temporarily relocate to be close to their hospital will have to rent an apartment and pay utilities. It all adds up fast!
Shelbie said “We started saving money. Like every penny we could. We were already doing Dave Ramsey but doubled living expenses is no joke. Hospital living is expensive. Insurance for sick kids is expensive. We didn’t make a huge dent but it helped somewhat….. still feel like we are recovering financially 3 years later”.
Your baby needs you. You are now not only their parent(s), you're their greatest advocate. Above all else you need to be strong, steady, and full of love for your bundle of joy- and trust me, you may not think you'll feel joy over this child right now, but you will. So Much Joy.
Remember, you've been chosen to enter this world of Heart Parents because you are strong enough to do it!