What to Say to a Heart Warrior Mom, and What Not to Say
“Well she’s actually safer inside.” They would freeze in discomfort clearly unsure what to say next. “She needs open heart surgery around 4-6 months old.” I would explain to another person. Next, I would erupt in a nervous giggle not wanting to make them uncomfortable, also unsure what to say next.
When we share big scary news, like a baby having a life-threatening condition. If you announce that your baby needs open heart surgery to survive, most people struggle to find the right words to say. Previously, I wouldn’t have a clue what to say either.
In this post, I want to help us all out. We’ll go over what to say to a heart warrior mom, and what not to say. This should help guide everyone on how to better communicate comfort and support to families affected by CHD.
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Sharing my difficult news
Despite the awkward exchanges, I continued to tell people. I was open about what was going on. This thing was too big to keep in.
At this stage, most strangers could correctly assume I was pregnant. It was obvious. In public, people often react excitedly to pregnancies asking about gender, due dates, and baby names.
I mostly shared to try to shut down what felt like fluffy conversations.
I was excited to have my daughter, but moreso I was terrified. She had to fight an uphill battle from the second she was born.
I didn’t want to discuss baby clothes, strollers, and bows. It felt like a waste of time and energy, superfluous. And a nagging fear remained that I wouldn’t get to experience certain “fun” baby things. (Spoiler alert: heart mamas, you are absolutely allowed to be excited about anything and everything related to your baby.)
I struggled to get myself there though. This was my third baby, I had already experienced a baby shower, baby gear, and planning for a baby.
Instead this time around, I was trying to learn about cardiology, researching pediatric cardiac surgeons and hospitals, and discovering medical mom life survival tips. And I didn’t want to make space for the fun.
Of course, this is an atypical high-risk pregnancy experience and most folks would never expect it. So it makes sense people don’t know what to say.
What Not to Say
Those outside the heart community struggle to know what to say to heart warrior parents when they’re dealing with something like CHD, open-heart surgery, and other challenging times as a medical parent.
This isn’t surprising as some of these experiences are rare. But they’re more common than most realize. About 40,000 infants in the US are affected by Congenital Heart Defects every year, and 25% require a significant heart procedure or heart surgery during their first year of life. Even if they haven’t opened up to you about it, you likely know someone with a CHD.
Now, when someone tells you big scary news, like their child being critically ill, needing open heart surgery, or only being able to eat through a feeding tube.
Whatever you do, try not to say the following.
- “I wouldn’t be able to do that.”
- “I don’t know how you do it.”
- “I could never do that.”
- “Are they fixed now?”
- “I know so and so’s baby had a hole in their heart and it just closed up on its own.”
I can’t imagine anyone has ill intent behind these words. But words matter. Words make an impact.
These responses can minimize a heart mom’s struggles and feelings. They suggest she has a choice in the matter when she doesn’t. They invalidate her reality and can make her feel alienated during likely the most difficult time in her life. These words won’t help her.
What to Say
I reached out to heart parents to ask them what they wish they heard. I asked what they needed to hear to feel seen and supported during various points of their family’s journey with CHD. Words that would have lifted them up to be able to make it through the challenges of caring for a medically complex heart baby.
Congenital Heart Disease is a lifelong journey and heart families need more support.
Use this guide to learn better ways to communicate your heartfelt support. There are several ways to help heart parents when their baby is battling Congenital Heart Disease and needs open heart surgery, but here we’re specifically discussing words. Say this, not that to parents, CHD edition.
Let’s get into what to say to a heart warrior mom and dad.
What to Say: Following a CHD diagnosis
Being told there’s something wrong with your baby’s heart is news likely no one is prepared to hear. It can knock you down and is difficult to get back up.
I asked parents what they wished someone would have said after their child was diagnosed. And they passionately shared.
Parents of a newly diagnosed CHD baby need to be comforted and validated.
“It’s going to be okay. But it’s okay if you’re not okay right now.”
Abbey, Saulie’s heart mama
“It’s not your fault. Don’t blame yourself.” – Heart mom of a 2-year-old boy
“It’s okay to be scared, there will be a lot of unknowns. This will be the scariest rollercoaster of your life. There will be lots of ups and even more downs. Take it day by day and don’t stress on what’s to come. Be present, process your feelings. You’re stronger than you think when you don’t have a choice.”
Cortnie
When parents receive a heart defect diagnosis for their baby, they want to feel supported. They need to understand they’re not alone in this.
“I’ll be by your side no matter what.”
Biana – mama of a TOF/PA warrior
“Find a community on fb. You don’t know how much it will help to hear from others who went through it.” – Nicole
“That it’s going to be okay! Right now it’s overwhelming and scary but, there IS light at the end of the tunnel. I have made great friendships (online) thru the heart community.“ – Kaysen’s Mom – ASD/VSD/ECMO/Stroke Warrior
New heart parents wish someone could share basic CHD information and what to expect.
“CHDs are the most common birth defect and you will make it through this. There is nothing ‘defective’ about your child and there are most likely people you already know and look up to that are born with CHD(s). It will be hard, but don’t let this diagnosis take over your life and try to enjoy all the new moments with your child. There are support groups and a lot of moms out there that you can talk to — let me give you some more information on who to reach out to or groups to join.”
Kristine
“Every case is unique. Even if your child and another share the same defects, you may have a totally different experience than they did, and that’s okay. While it’s totally okay to seek support from those who have lived this before you, make sure to leave space for your own individual experience and what that might bring.” – Sarah, TOF/PA mom
“That is so scary and unexpected, I’m so sorry you and your child have to navigate through all of this, it isn’t fair. There will be some bad days ahead, but there will also be some really good days. Enjoy the good days for what they are and know that the bad days won’t last forever, even when it feels like it might. You are not alone in this journey and while no other child is exactly like yours, there are many heart families and a community that you are now a part of who ‘get it’ and understand what you’re going through, and have probably thought every thought you’re currently having. It’s scary and overwhelming and unexpected but there’s nothing you did wrong and nothing you could have done differently. You’re about to find out that heart kiddos are stronger than most, and heart parents are even stronger.” – April
What to Say: In the grind of medical motherhood
Having to take care of a medically complex baby is complicated and next-level exhausting.
I asked parents what they wished someone would have said to them while they were in the daily grind of caring for their baby with CHD. And they openly shared.
Heart parents want to be seen in their extra efforts.
“Your daughter is so lucky to have you caring for her.” – DILV mom
They want to be validated in their challenges and challenging feelings.
“It’s okay to feel exhausted and even cheated out of having a ‘healthy’ child.”
Nicole
“It’s okay to feel overwhelmed in learning how to navigate your new normal.” – Abbey, Saulie’s heart mama
“We had to deal with a feeding tube I wish someone would have said you’re stronger than you think, that is so hard and we’ll be cheering for your child every step of the way.” – April
Parents of a heart baby want to be reminded to slow down, live in the present, and take care of themselves.
“Just take it day by day. Don’t stress about the unknown future.”
Heart mom of a 2-year-old boy
“You got this, mama. But don’t forget to take care of yourself so you can take care of your child.” – Kristine
“Enjoy the little things like the smiles and hugs.” – Cortnie
And more than anything, they want to be supported and helped with their extra heavy load.
“What can I do to make things easier?”
Biana – mama of a TOF/PA warrior
“’I’m bringing dinner over on _____. How does _____ sound?’ ‘Want to hang out?’” – Kate
“Offer help/to learn— can you show me how to run the feeding pump or change tubie tape.” – Kaysen’s Mom – ASD/VSD/ECMO/Stroke Warrior
“You’re doing great at a role you never asked for when you wanted to become a mother. Are you finding time to take mental breaks for yourself? Being a mother and a nurse at the same time can be very challenging. What’s something I can help take off your plate and help carry your load?” – April
What to Say: Before heart surgery
Trying to prepare for your baby to undergo a major medical procedure comes with many mixed emotions. It’s a lot to handle.
I asked parents what they wished someone would have said to them while they were preparing for their baby’s major heart procedure or open heart surgery. And they shared.
These parents need to know others are there to support them and they’re not in this alone.
“Trust your doctors, trust your faith, know that this hasn’t happened yet, and if you can’t be strong, we’ll be strong for you. We are here to carry you and your child through this challenging and scary time. There is no wrong feeling or emotion that you might have right now.”
April
“What can I do for you? What do you need?” – Abbey, Saulie’s heart mama
“I’m here to listen and support you.” – Biana – mama of a TOF/PA warrior
Parents in this situation wish for emotional validation.
“It’s ok to be angry. You did nothing wrong.”
Kate
They want to be reminded to consider their mental health.
“Breathe, prepare yourself for what’s to come.” – Cortnie
“It’s always a hard time leading up to the big surgery but you will feel so much better once it’s done. Bring another close friend or family member that can distract you from driving yourself crazy on the big day.” – Kristine
CHD parents want to know they are doing a good job advocating for their warriors.
“If you’re worried about doing the very best you can for your child, then you already are. Give yourself some leniency and self compassion on the harder days.”
Sarah, TOF/PA mom
And some wished for some honesty and transparency to help them feel more prepared.
“I wish someone would have put out there more of the ‘bad’ things that can (and do happen) like ECMO and stroke. We were only briefly warned of these things and they both happened to us. It was a slap in the face. Complications do happen and I wish I could have been more prepared instead of hearing just the good outcome stories.” – Kaysen’s Mom – ASD/VSD/ECMO/Stroke Warrior
What to Say: During open heart surgery
Having to wait around while your baby is under for open heart surgery is agonizing.
I asked parents what they wished someone would have said to them while their baby was going through their open heart surgery. And they vulnerably shared.
Parents of heart babies want to be seen, understood, and emotionally supported.
“I’m so sorry, this isn’t fair.”
April
“’I’m not looking for an update, just wanted to let you know I’m thinking of you.’” – Kate
Heart parents need to be reminded to take care of their physical and mental health.
“Take a breath and time alone or bring someone to support you.”
Nicole
“Make sure you eat” – Cortnie
Heart warrior parents might want to hear it’s okay to let go and trust.
“You have the best medical team and your child is in good hands. Is there anything I can get you to eat or drink that’s not from the hospital?”
Kristine
“Always good things happen with the grace of God.” – Abbey, Saulie’s heart mama
What to Say: While inpatient for recovery
Sometimes there is a lot of support leading up to and during a baby’s open-heart surgery, but then it can decline sharply after. Recovery post-open-heart surgery is crucial and often a risky time for a baby. Parents need continued support during this phase.
I asked parents what they wished someone would have said to them when their baby was in the hospital recovering. And they shared.
They wish to be told the reality of recovery so they are better prepared.
“There will be lots of big steps forwards and a few steps back. But each day is closer to recovery.”
Nicole
CHD parents want to be encouraged to not feel shy in advocating for their baby, ask questions, and know it’s okay to challenge their CHD child’s medical team.
“Ask questions and do not ever feel bad for advocating for your baby.” –
Abbey, Saulie’s heart mama
“It’s okay to challenge your medical team because you are a part of that team! At the end of the day, you are the one that sees the nuances of your child day in and day out. So, if something is off, don’t hesitate to advocate for yourself and your child.” – SARAH, TOF/PA MOM
They want to feel continued spiritual support.
“Believe in them.”
Kaysen’s Mom – ASD/VSD/ECMO/Stroke Warrior
“Reminders that they had us in their thoughts and prayers” – Heart mom of a 2-year-old boy
They want offers of help with regular life to-dos, and assistance in caring for themselves, so they can focus on their child’s recovery.
“‘Don’t worry about your yard work, I’ll handle the mowing.’ ‘Would you like me to come by with coffee? Or so we can take a quick walk to get you some fresh air?’”
Kate
“Is there anything I can get you to eat or drink that’s not from the hospital? Is there anything I can do so that you don’t have to leave your child’s side?” – Kristine
“Is there anything you need.” – Biana – mama of a TOF/PA warrior
Heart parents wish others would tell them they are important too and need to take care of themselves.
“You can’t take care of him until you take care of yourself.”
Cortnie
“What have you done for yourself today? Have you eaten or gone for a walk outside for 5 minutes? Your child needs you to take care of yourself too. Time inside the hospital feels like a casino, continuous and never ending and it’s a culture shock when you see the rest of the world carrying on with the lives while you feel like your world has been stopped and flipped upside down.” – April
What to Say: If living in the hospital longer
Heart warriors that have an extended period in the hospital put an extra strain on parents.
I asked these parents what they wish others would say if they had a long inpatient stay.
These parents need to be reminded that their health matters too, and that it’s okay to take a break from the hospital and spend time on themselves.
“Make sure you get out of the room. Get a change of scenery. It will help tremendously with your mental health.”
Kaysen’s Mom – ASD/VSD/ECMO/Stroke Warrior
“You can’t take care of your child if you don’t take care of yourself. It’s so hard to do, so much so that one of the ICU attendings forced me to spend an hour in the healing garden one day. Without a little bit of reprieve, you can’t be the strong advocate your baby needs you to be.” – Sarah, TOF/PA mom
“It’s okay to need a break, don’t feel guilty for stepping outside for a little while.” – Cortnie
Inpatient heart parents wish for people to offer them help in and out of the hospital.
“I am here for you. Please call anytime if you need emotional support or to talk to someone.”
DILV mom
“How can I help? What does your family need?” – Abbey, Saulie’s heart mama
“What meal gift cards are your favorite? Here’s a comfortable blanket, slippers, sleep mask and some snacks. I would love to sit quietly with you if you want company or drop off fresh clothes/take dirty clothes home and wash them for you if you’d like.” – April
“Can I come by and bring you coffee/snack/etc.” – Biana – mama of a TOF/PA warrior
What to Say: Upon returning home
Returning home post-op, or after a long hospital stay, is often exciting and celebratory, but also scary.
I asked parents what they wished someone would have said to them when they got back home. And they shared.
Heart warrior parents wish for continued support as they try to adjust to life at home.
“Let me bring you a home cooked meal.”
Kristine
“I’m going to send your family dinner.” – Abbey, Saulie’s heart mama
“Trust your doctors and that they would not have let you go home otherwise, but also trust your motherly instincts. Try to make sure you’re finding ways to stay mentally healthy throughout the days and lean on family and friends who want to help with food, laundry, cleaning, etc.,” – April
They want to be reminded that it’s okay to feel joy and enjoy these moments.
“Your baby will let you know their limits – even if they’re super young or small. I was worried about every way I held her, every little stitch in her chest, if I was somehow hurting her, etc. And in all that fury of worry, I forgot to just pause to be her mom a lot of days. Always take the pause to enjoy your baby when you can – you deserve that time.”
Sarah, TOF/PA mom
“Soak up the cuddles, take it day by day” – Cortnie
CHD parents bringing a baby home wish others would validate their fears and talk honestly about the challenges.
“It’s going to be hard. It’s going to be a learning curve.”
Kaysen’s Mom – ASD/VSD/ECMO/Stroke Warrior
“It’s okay and normal to feel scared. Don’t be afraid to call doctors with questions.” – Nicole
Words that hurt a CHD parent
On the flip side, sometimes words can hurt more than they help. Parents in this situation are already dealing with too much. Try to pause and think before you speak.
I asked heart parents what were some things they heard that hurt. Whatever you say, do not say the following.
Avoid comments that invalidate a heart mom’s feelings or minimize their experience.
“At least they’re still alive… she’s fixed, right?… I thought you’d kind of be over it by now.”
Kate
“It’s ‘just a procedure’ or ‘they won’t even remember any of this’ or any comments about weight or milestones.” – April
Allow heart parents space to make their own decisions without inserting your opinion.
“’We will support you in whatever you choose.’ -referring to terminating or carrying on with the pregnancy. This actually caused a lot of stress, anxiety, and worry about everyone’s opinions about our ‘choices.’ A simple ‘we’re here to support you,’ would have been enough.”
HLHS mom
Stay away from saying things that downplay the significance, grief, and trauma. And ignore the fact that there is no cure and CHD is a lifelong condition.
“At diagnosis – I know someone who has gone through this and they are fine, so you are going to be fine. Also – You’re so strong, you will get through this. (These bother me because they don’t acknowledge that this condition presents lifelong challenges beyond the infant surgeries and seem to deflect from the seriousness of the condition.)”
Expecting a heart baby soon
“Unfortunately, I have a lot of family members who don’t understand the ongoing PTSD from our child’s open-heart surgery. I wish people could understand how to give someone a little more grace.” – Abbey, Saulie’s heart mama
“Don’t ever imply to us that our child is ‘cured’ or ‘fixed’ and can be ‘normal’ now.” -Kaysen’s Mom – ASD/VSD/ECMO/Stroke Warrior
Don’t suggest that the heart mom is at fault.
“You must of did something while you were pregnant for your baby to come out like this. Everything happens for a reason. It happened to your child because you are a strong person, and it happens to your child because you have a stable family household.”
Heart mom of a 2-year-old boy
“Comparing the open heart surgery or scar to something else that is not on the same scale. Don’t ask if it’s because of any vaccines or medicine/vitamins that the mom may have taken. Don’t ever question mom about how it could have happened.” – Kristine
Avoid suggesting you know better than them or that the doctor is wrong.
“Pre-op: I sure hope she can get that feeding tube out soon! And ‘you’re so lucky she’s already sleeping through the night!’ At prenatal diagnosis: maybe by the time she’s born, it won’t even be an issue anymore! After birth: she seems to be doing so good that she might not even need surgery.”
DILV mom
“Pray for a miracle. Maybe the doctors got it wrong. Everything’s gonna be ok.” – Biana – mama of a TOF/PA warrior
Words that made a positive impact
I also asked parents whether there were any gold star supporters. People who said something just right that made a lasting and positive impression and enabled them to keep going.
These heart moms appreciated being told it wasn’t their fault. That there is hope and this is only part of their heart warrior’s story.
“Your little girl is so precious. Her diagnosis is only a part of who she is.”
DILV mom
“There is a light at the end of the tunnel. It wasn’t because of anything you did.” – Kristine
Heart warrior parents felt supported when others recognized and validated their challenging feelings.
“A neo natal nurse said – All of your feelings are valid. It’s okay to be angry, it’s okay to be scared. It’s okay to grieve the birth and the child you expected to have. She also said – There’s so much fear and uncertainty, don’t forget to celebrate the pregnancy and the baby. You’re having many complex feelings, don’t forget to feel joy and pride.”
Expecting a heart baby soon
“Feel your feelings. You don’t have to be strong a lot of the time.” – Heart mom of a 2-year-old boy
“I have a mutual heart mom who reassured me that it was OK to feel a little crazy some days.” – Abbey, Saulie’s heart mama
Some found comfort in their faith.
“My faith became stronger and I learned that God never promised there wouldn’t be hard days or heartbreak. He is grieving with us, however when we ask Him to, he will carry us through the hard moments/days. For many days I don’t know how I kept going but I asked God to carry me through it and He did. He didn’t fix our problems or solve them or provide medical miracles, but his Grace and love provided me with strength to keep going until better days.” – April
These parents found transparency about what they were about to go through helpful.
“We found out about my daughter’s defects at 36 weeks and barely had time to prepare before she was born. When we first met one of the ICU attendings he said ‘Being in the ICU is like a roller coaster – there will be up days and down days and everything in between.’ Going in with that roller coaster mentality really helped keep my husband and I grounded on the tougher days.” – Sarah, TOF/PA mom
Understanding the heart family experience
Having a baby diagnosed with a life-threatening condition, walking them through open-heart surgery, recovery, and caring for their medical needs is a very different reality than most can imagine. It’s impossible to fully get it unless you live it.
However, this doesn’t mean others cannot try to understand and find a way to empathize. Hear from a few heart moms below on what they think others should understand about the heart parent experience.
“I think a lot about one of our first nurses who said ‘These used to be the babies that we would hand to the parents until they passed,’ in regards to my daughter. While it was gut wrenching to hear, it shows how many incredible advances have been made in the world of CHD in just her nursing career and lifetime. It gives me a lot of hope for what can be accomplished in my daughter’s lifetime as well.”
Sarah, TOF/PA mom
“Heart families mostly live life between apts when they’re younger, and we try to celebrate the good days and ride out the waves that come with the bad days. We know we’re not alone in our challenges and that there are other families who are navigating the apts, the procedures and surgeries, the hospital stays and the drives to/from home/hospital. The medicines, the milestones and questions and fear and anxiety and worry as well. No child deserves this life but it is remarkable to see how far medicine has advanced there is a tiny bit of comfort knowing we are not on this journey alone.” – April
“It’s a hard time for parents. They have so much going on stress, anxiety, and trauma. What they need to hear is just positivity and a little encouragement. Ways they can help post-hospital or even hospital stay is Uber Eats.” – Heart mom of a 2-year-old boy
Closing Thoughts
Parents of CHD warriors are dealt an unfair hand. They need encouragement, guidance, and support to get through taking care of their medically complex babies.
People process and manage stress in different ways. Not everyone will need or receive help in the same way.
Leaving space for CHD parents’ feelings, validating their emotions and experiences, providing emotional support, offering specific ways you can help, encouraging them, and giving them grace are great places to start.
Consider comments direct from heart warrior moms in this post who have lived these experiences. From having a baby diagnosed with a critical heart defect to preparing them for a heart procedure, waiting during their open heart surgery, managing their recovery, and more medical care needs. They know what it’s like.
Use these What to Say comments to guide you in finding the best ways to communicate your supportive presence and genuine offers to help. Also, be sure to stay clear of words that hurt.
I hope this can educate and inspire more supportive and understanding interactions with heart warrior parents. It’s a win win for everyone.
THANK YOU to the heart mamas who contributed to this article.
