11 Things New Heart Parents Need to Know
I often see new heart moms posting on Facebook support groups asking for advice and insights. Questions like, what the hell am I supposed to do now? Where do I go? Who is the best surgeon? What happened to your kid who has the same heart defect as mine? What can I do for all this anxiety and panic?
When I found out about my son’s heart defect, I felt the exact same way and I had been a nurse for 10 years. I had no idea what to do or who to turn to. I had no experience with congenital heart disease (CHD) and when the pediatric cardiologist said the acronym TAPVR, I looked at her like she was speaking a different language. Like she had made it up to scare me. So, I get it. These new parents want answers and I hope this list helps.
I’m not a cardiologist, and I’m not an expert on CHD. I’m a heart mom. I’m an expert on my heart warrior and his journey. It is important to understand that just because your child has CHD doesn’t mean they will need surgery. Some families have to deal with a road that does involve surgery (sometimes multiple) soon after their baby is born. The majority of the information in this article is for the latter group, where surgery is imminent and you have to prepare for an uphill battle. I found out about my son’s CHD diagnosis one year ago, so I admit that my experience is limited. My baby boy was born, had three open-heart surgeries and lost his life to CHD (and other complications). I have experienced every facet of loss and grief through this process. I guess what I am saying is, trust me on this…
1. Cry and be upset.
Yep, this blows. This is not fair. Be angry. Be scared. No one can tell you why this is happening to you and your family. It is going to suck when you see (what seems like) everyone around you having healthy pregnancies and you are stuck in the pit of hell with your child. All of those feelings are normal. I wish I could tell you those feelings go away, but because your little one has a tougher road than most, I can’t promise you will ever feel 100 percent good about what is going on. And if you do, please share with all of us what you are doing because we need some of that!
2. Understand your baby’s defect and the treatments available.
This is one of the most important steps. You need to understand the normal workings of a heart versus what is going on with your child. There are a lot of different heart defects (around 18 with variations). Some are more severe than others. Unfortunately, CHD is a very complex, multi-faceted issue. Having a heart warrior forces you to go back to school. If you are not understanding the anatomy and physiology, have people draw you pictures, ask if they have virtual reality education available, and read as much as you can from valid sources. When I say valid, I mean written by medical doctors who are experts in the field of CHD. It’s great if your uncle is a cardiologist, but if he doesn’t care for adults or children with CHD, he is not the person you should be getting your advice from. Keep asking and asking and asking until you understand what is going on and how it works. That is also going to hold true after your baby is born and is in the hospital. Some websites I would recommend:
• Center for Disease Control
• Children’s Heart Foundation
• American Heart Association
3. Find your facility.
This matters. Don’t let anyone tell you differently. Please. You need to make sure you are at a facility that has the experience and support required to care for your baby’s complex medical needs. Not all facilities are created equal. There are many different reasons why you should go to one facility over another. The first obvious questions are: where do you live? What are your options for travel? What about your insurance coverage? Yes, Texas Children’s Hospital has been ranked number one for cardiac care for some time now, but is it realistic to go there when your kid will be in the hospital for a few months after surgery when you don’t live within driving distance? Probably not. Are you a bad parent for not taking your child to Texas or Boston? Hell no. There are several high-quality programs you can go to around the country. Looking at it from the other point of view, the most conveniently traveled facility might not be the best option for your warrior either.
The Pediatric Congenital Heart Association (PCHA) has spent a lot of time developing tools for parents to use in order to make these decisions. It includes a guided questionnaire and education on STAT categories and statistics. If you don’t know anything about this, please take the time to read and use this information. It matters if your kid has a rare heart defect and the surgeon you are talking to has never fixed it before (or has limited experience with it). Surgery is also only one part of the story. The critical care facilities matter as well. Do they have a dedicated cardiac intensive care unit with intensive care doctors and nurses who are experts at CHD post-operative care? Ask for a tour of the facility. Ask about all of their numbers including their outcomes. Some facilities don’t readily share their outcomes data and that should make you nervous. Find the best facility for your situation.
• Ask these important questions to your care team.
• Making sense of congenital heart surgery data: A guide for patients, parents, and practitioners.
4. Find a medical team you trust.
Once you’ve found the facility that matches your family’s needs, find a team you trust. Most large facilities have multiple surgeons and cardiologists to choose from. You will need one of each. You may not have a choice in who you are set up with originally, but it is important that you trust, respect and communicate well with your child’s doctors. From now on it will be a team effort, and you are the captain. If you find someone that you like, ask them (like you would a date to the prom), will you be my baby’s doctor? You have to fight for your child’s life with people you feel have your back.
Once you get their opinion about a treatment plan, there is nothing wrong with seeking out a second opinion. Your doctors should encourage it actually. There are a lot of second opinion programs from some of the larger facilities in the US, and you should use them (see links below). If something doesn’t sit right in your gut about the plan, please ask someone else. If everyone is saying the same thing, then you need to trust them. This is not a step that I chose to do for my own situation, but it is something to be aware of.
• Children’s Hospital of Wisconsin.
• Boston Children’s Hospital.
• Laurie Children’s Hospital of Chicago.
• Texas Children’s Hospital.
• Children’s Hospital of Philadelphia.
• Cincinnati Children’s.
5. Establish a support system.
This is difficult, and a part of the process that no one warned me about. Understand that the people around you are going to try and relate to what is going on but it isn’t the same. They will tell you about their preemie baby who spent eight weeks in the NICU on oxygen… yep, that’s not the same. They will give you advice like, “take care of yourself,” “you should get some sleep,” “take a break,” or my favorite, “just relax.” When my son Theo was critically ill and on ECMO (a heart/lung machine), basically dying, one of the attending critical care doctors told me to, “stay home for one day and get out of the hospital.” I told him to shove it. One day away from Theo was a day that I would never get back with him. The doctor who I am referring to is amazing, and I know he was saying it out love and concern for me because I was a walking zombie/hot mess. At that time, it wasn’t the type of advice that was helpful to me.
Things will change. Your relationships will change. You will make new friends and possibly lose old ones. I hope this part isn’t true for you, but it is an incredibly tense and difficult situation and people have a hard time knowing how to be supportive. The only thing you can do is lean on the people you feel comfortable leaning on and worry about other relationships later. Remember that your priority is your family and your sick child. You can’t worry about your girlfriend from high school who expects you to sit on the phone and talk about how stressful her life is. That’s a hard nope. The people that want to be there for you will allow you to be selfish and stay in your tense stress bubble where you can think of nothing else but your baby.
You will meet a lot of heart moms (and dads) throughout this process. Some of the friendships I made with other heart moms were part of the reason I was able to manage. Ask about support groups at your hospital or other organizations who offer support to parents. Mended Little Hearts is an awesome nonprofit organization with the mission to connect parents and provide support for families just like yours. There is someone nearby, I promise! You should never feel alone throughout this process.
6. Make a plan and know your resources.
Talk about a life flipper right? Everything just changed in an instant, and while we would all like to quit our jobs and sit in the hospital for as long as it takes our children to get better, it’s not that simple. Even if you had a truckload of money, being away from home and not working will drain your resources. Not everyone will have children who need an extensive hospital stay, but for those of you who do, start making your plans. Find out what your deductible and max out of pocket expenses will be. Those are guaranteed payments you will have to make. If you were fortunate like me, and have your baby at the end of the calendar year, you’ll have to pay them twice pretty quickly. Before you get too overwhelmed, ask the hospital to talk to a social worker. Even before you give birth you should know what resources they have. In the state I live in, after 30 days of in-patient treatment, we could apply for Medicaid (which helped with a lot of the cost). I had no idea that was even an option until the social worker told me about it. They may also be able to get you help with transportation and meal tickets. At most of the larger facilities, there is a Ronald McDonald House nearby.
I am a proud person and when someone offered to throw us a benefit, I felt really uncomfortable. Do it. You are not weak or begging for money. Let this be the way people help you! You never know what expenses are coming your way. If you end up not needing all the money you received, donate it to back to organizations that fund CHD research or back to the staff/floor/hospital that has made an impact on your life. That’s the amazing thing about these situations, people want to help and can make a big difference, so let them.
7. Every child is different.
When you find out about your baby’s heart defect, the first thing you are going to want to know is, are they going to be OK? Then you are going to want to know how long their recovery from surgery is going to be and how they will respond. I’m a planner at heart, it bothers me to not have all of this planned out and know the answers to these questions. Every child is different. Do not compare your child to anyone but themselves. It might bring you comfort to go on social media and ask other moms with children who have the same defect as your child what you should expect. They may tell you things that give you comfort or they may have horror stories that will bring you hopelessness. Just because Susan Jones from New York told you her baby with HLHS went home two weeks after their Norwood doesn’t mean your baby will. Or the opposite, her baby didn’t make it home. Every kid is different. Every situation is different. Every warrior has their own battle to fight. For some kids with less complex defects, the answers may be clearer. For those of us who have a complex situation, it will come with a lot of twists and turns. It is not a single lane highway to victory.
8. Always have hope and celebrate the small victories.
A good day with your warrior is a good day. Celebrate it. If their medication was weaned down (even by 0.1mg), their oxygen is down one liter, they are more awake and smiled, they are tolerating more formula through their NG tube… awesome. Yesssss. Be happy. Because those days are what get you through the really bad days that might come your way. Two steps forward and three steps back. It is the dangerous dance we all have. Make those victories count and allow them to keep your hope alive.
9. Advocate and be a mama bear at all times.
There is (usually) an innate sense in all moms to protect their children. When your baby is born, you get to know them, you see them every day, all day. The doctors who round on your baby once a day, do their best to know them too, but they are not as good as you. Ever. If you think something is wrong or something looks different, you don’t need to know why, you need someone to pay attention to your concerns until you feel comfortable with your child’s status. This goes back to me telling you to ask questions and then ask some more. The team you have surrounded yourself with should take you seriously when you are worried. Move up the chain of command until you are satisfied. If you feel like something is wrong, you are more than likely right. Follow your gut.
10. Educate people around you and share your story.
Did you know CHD effects one in 100 kids (40,000 kids) a year? Did you know that twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined (yet funding for pediatric cancer research is five times higher)? Did you know that the mortality rate for CHD has declined by almost 30 percent in the last decade because of advances made through research?
Isn’t it amazing that no one talks about this? The general public has absolutely no idea what CHD is and how it effects our children. That needs to end. We need to start shouting from the rooftops or come up with some viral challenge on the internet to make CHD a hot topic. We need more champions for CHD like Jimmy Kimmel, whose son was diagnosed with Tetralogy of Fallot (TOF), or Shawn White who was born with TOF and still went on to achieve amazing things. More public awareness equals more money for research which produces advancements in treatments for our children. Sharing your story and educating everyone around you will save lives and will impact your child’s future. Please stand and join the fight.
11. Enjoy your heart warrior.
Your baby is special. Heart warriors remind us all how resilient and tough children are. They remind us how tough and resilient we are. This world is something I knew nothing about a year ago, and I hate the agony and pain it has brought me, but I’m thankful for my warrior, his beautiful face, his big brown eyes and our amazing new CHD family. Stay tough, be proud, take a lot of pictures and videos (good and bad), don’t worry about tomorrow, and never give up.
Love to all near and far xoxox
Callie, Theo’s mama