How to Support Parents When Their Baby Needs Open Heart Surgery
Your friend, sibling, or neighbor is starting to prep for their baby’s open heart surgery. You want to help but don’t know how. You don’t want to bother them when they’re already dealing with so much.
While I haven’t stood in these shoes exactly. I have been on the other side. I have been the one packing my daughter’s blankets, arranging accommodations, and going in for pre-op. I’ve been the one handing my child over for open heart surgery. It’s an impossible reality for most to imagine.
Many people asked what they could do, how could they help. At the moment I didn’t know how to say what I needed. I was either in shock or mentally tapped out.
Now upon reflection, I’m sharing ways for others to support parents when their baby needs open heart surgery. So if you have a family member, friend, or coworker and they’re facing this big scary thing, here’s what you can consider doing to support them.
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My heart mom surgery experiences
I slept in the hospital ICU as my daughter went through open heart surgery and recovery as a newborn, and again as a 6-month-old baby. It’s a trying reality.
Her first surgery was a surprise emergency that had me in shock, and struggling to process and manage it all. I was a mess, and I had no idea what I needed.
The second time around, we had a longer runway. You can never be fully ready, but at least there was more time to process and put plans in place. This time, I had a slightly better idea of what I needed and how to rally that support.
Understanding the medical parents’ perspective
Before my daughter was diagnosed with a Congenital Heart Defect, I didn’t know about CHD and never thought about babies needing open heart surgery. I only associated open heart surgery with older adults.
But the truth is, people of all ages require heart procedures, open heart surgery, and even heart transplants – from newborns and toddlers to teenagers and adults and every age in between.
Open heart surgery for a baby has a significant impact on a family. There can be great financial costs, expected and unexpected which is not all covered by insurance.
CHD parents may face lesser pay, job loss, increased living expenses, specialty medical care costs, increased transportation costs, and other costs as they navigate caring for their heart warrior in the hospital.
Managing this high-risk surgery takes an emotional and physical toll on parents too. They may experience anxiety, stress, exhaustion, depression, and overwhelm.
Trying to get your baby the life-saving surgery they need is a lot to handle. And then depending on their specific situation, also having to live life “normally” whether at work or caring for other kids, can easily be too much.
Parents need community support to get through this, but it’s not always easy to know what you need.
Who can support CHD parents?
Support can come in all shapes and sizes and from all different people.
- Immediate family members
- Extended family members
- Friends, neighbors, and coworkers
- Fellow CHD parents and support groups
- Church or other community groups
- Healthcare professionals
- Community organizations and charities
- CHD family support services
- Hospital patient and family services
Heart parents may only feel comfortable sharing information with a select group of people. Please respect that they do not owe anyone specific details about their child’s medical journey.
Also, they may only feel comfortable with some individuals managing certain tasks.
Please consider your relationship with the parents as you consider ways to help. The goal is to help support them in this challenging time, and not to add any additional burdens. Don’t offer to help expecting something in return.
Why support these parents
CHD affects more babies than many people realize. You will likely know someone who has a baby with CHD. Not all require immediate or significant interventions, but thousands do require open heart surgery.
I think it goes without saying, that parents bringing their child in for an open heart surgery are dealing with a lot. They are likely sleep-deprived, stressed, and extra anxious.
Their mental load is off the charts. Their tank is emptier than empty.
They’re trying to figure out what to ask their child’s heart surgeon. They have to plan the logistics, make it to numerous cardiology appointments, pack the bags, and manage all the emotions.
Children’s hospitals offer a lot of great services to support their families. But, parents might not know about these, or may not have the time to take advantage of them.
My brain was maxed out. I had no capacity to take in any more information. My mission and all my energy went to keeping my critically ill child stable, and alive, and trying to get her to gain weight. I know there were more support options for us, but I could not look into these, call around, sign up, or fill out forms.
Heart parents need their village to rally. They need a boost, a ladder, a chopper to get up this mountain. Heart moms and heart dads need to be taken care of to better take care of their heart babies.
Practical Ways to Support Parents When Their Baby Needs Open Heart Surgery
Consider the following ideas to support them in alleviating some of their burdens. If you can’t do something or offer something without needing their assistance or guidance then that’s probably not the best way to try to help. Try another way.
The other side of this is even if people need help, sometimes they are unwilling to accept it. You can gently reassure them that you don’t need anything from them, you don’t expect anything back, and offer additional ways to help. But ultimately if they don’t want it, don’t push it excessively.
Emotional Support
- Regular Check-Ins: Text or call to offer a listening ear without expecting a response. If you’re close enough, you could offer to meet for coffee or lunch and allow the parent to vent or simply sit with you for a break. Learn what to say, and what not to say to CHD parents direct from heart moms.
- Emotional Relief: Share funny memes, peaceful videos, or whatever will help distract the parents with something more lighthearted.
- Encouraging Notes: Send uplifting cards or messages. You could send these leading up to the surgery, or during the hospitalization.
- Therapy or Counseling: If they desire professional help, you could help them find the appropriate resources.
Physical Support
- Meal Preparation: Help organize meal trains with friends or neighbors, grocery shop for them, or deliver already prepped home-cooked meals.
- Household Chores: Offer to housesit, or help with cleaning, laundry, or yard work.
- Childcare Assistance: Watch over siblings or pets to allow the parents to stay at the hospital and minimize how much they need to split their time.
- Hospital Sitter: If hospital policy allows, offer to swap places with the parents so they can go out or home for a couple of hours while you sit with their child in the hospital. Parents should be able to leave the hospital regardless, however, some prefer to always have a family member present by their child’s bedside.
Financial Support
- Fundraising: With the parent’s permission, start a crowdfunding campaign to help with medical, travel, and secondary expenses that quickly add up.
- Gift Cards: Provide gift cards for groceries, gas, or food delivery services (e.g., DoorDash, Uber Eats, Grubhub). Many parents can’t or don’t want to leave their babies in the hospital, getting meals delivered is a break and treat from the hospital cafeteria food.
- Expense Management: Assist in navigating financial aid options and medical bill organization. You could help them look into opportunities and options for financial support from CHD organizations or other general medical support organizations for families.
Logistical Support
- Transportation: Offer rides to and from the hospital or appointments. Or offer to shuttle their other kids to and from their school and activities.
- Errand Running: Help with grocery shopping, picking up medications, or other errands.
- Hospital Care Packages: Assemble care packages with essentials like snacks, treats, toiletries, magazines, a good book, cozy socks, and other comfort items.
Hospital Support
- Basic Information: Pull together basic information about the hospital where their child will have surgery (e.g., name, address, CICU phone number, visiting hours, parking information) so they have the pertinent details quickly and easily.
- Family Services: Look into what services the hospital can offer their family from housing to meal support, transportation and gas, parent support groups, educational services, and more. A hospital social worker can often help with these items.
Community and Online Support
- Support Groups: Do the legwork for the parents, and seek out local or online CHD support groups for them to connect with.
- Educational Resources: Research and share reliable information about CHD and what to expect during surgery and recovery.
- Social Media Networks: Find relevant groups on Facebook (e.g., Heart Moms, Children with Congenital Heart Defects) or Instagram and encourage them to join these online communities for real-time support and advice.
Final thoughts
This is not a journey any parent should have to deal with. And they certainly shouldn’t have to do it alone. It’s too much. And it’s not fair.
Consider this list if you know someone with a baby with critical CHD. Save it and share it so others can understand helpful ways to support parents when their baby needs open heart surgery.
There are a variety of options from emotional, physical, financial, logistical, community, hospital, childcare, house support, and more. There’s a way for anyone interested in helping to offer support.
For any heart parents reading this, please consider accepting help. I know it’s hard sometimes, I struggle with this. But managing a complex Congenital Heart Defect journey and open heart surgery is far removed from normal. We’re not supposed to be able to manage this easily or alone.
