9 Things You Need to Make It Through Your Child's Open-Heart Surgery

1. Tell everyone you know.

This is not the time for isolation, stoicism or privacy. Maybe you’re a reserved person who doesn’t like to draw attention to personal matters, but you’re going to need support, encouragement and prayers to get through this. Many people want to know, and want to help. Let them.

2. Prepare, however you can.

I consider it a blessing that we found out at my 22-week ultrasound that my daughter has a significant heart defect and would need life-saving surgery within days of birth. This gave us time to plan where I could give birth, interview surgeons to determine the best surgical team/plan, and to process the news that life would never be the same again.

But even if you don’t get months to prepare, I think the most significant thing you can do is to physically, mentally and spiritually prepare to see your baby post-op. For us, this meant having “the talk” with the nurse practitioner the night before the surgery, the one where she told us our daughter’s chance of survival (as we wept while holding our 7-day-old infant), the forms we signed (the ones that no parent should ever have to sign), and the pictures of a baby after a similar surgery (this is where I throw up on the NP). It will be extremely difficult but necessary.

3. Have a plan during surgery.

Maybe it’s lying in the fetal position for six hours. Maybe it’s having your sister handle who comes to the waiting room to sit with you. Maybe it’s taking a walk or getting fresh air while you wait. During my daughter’s first OHS, I was standing in an ICU bathroom shaking in front of the mirror, the panic and fear about to crash down on me. I could either stay strong and “mom up,” or have a big, fat breakdown. I “mommed up.”

People will tell you they can’t imagine what you’re going through, that you’re so strong, and on and on. What they might not realize is that you’re literally being held up by a billion prayers, a billion good thoughts, hundreds of people who love you and are thinking of your child every second, and if you share my beliefs, one amazing God.

4. Consider your squad.

Only bring those with you who can handle it. When I walked into my daughter’s post-op room, my mom stood with me as I held onto that hospital bed. She was strong for me so that I didn’t have to worry about her reaction or emotions. My husband had gone to get our two sons, so I was thankful to have someone with me once it was time to see my daughter after her surgery.

5. Ask questions when you see your baby.

Just keep talking; don’t go silent. When your child is brought back to the ICU, it might be the hardest thing you have ever seen. The wires, the tubes, the blood, the medical tape, the beeping machines, the dinging alarms, the ventilator breathing for her. She might look dead. Speak loudly and clearly. Ask someone to tell you exactly what each tube, wire and cord is doing to help your child recover. Hang onto the rails of that bed for dear life. You need the facts, but even if you don’t remember a word of what they tell you, I believe that your child will hear you speak over her at her most vulnerable moments. Touch her. Stroke her cheek, whisper in her ear, let her know you are there — your strength is hers.

6. Rely on the nurses.

They are your lifeline. They are working hard to keep your baby alive, to keep her stable, to keep the surgeons and attending physicians informed of every step on the road to recovery. Not only are they your child’s ally, they are yours, too. I can’t emphasize enough how often I was able to choke out one word, or give one look, and a nurse kept me from losing my mind.

There was one Sunday after my daughter’s third OHS, and my sons got to visit their sister post-op. I had come back to the ICU after saying goodbye to the boys, and I stopped short at the door. I couldn’t go in; this was not my life. The nurse, Jen, who was about my age and had three daughters of her own, came to me and said, “Hey. You’re doing a good job.” It was exactly what I needed to hear to keep going, to put one foot in front of the other.

7. Speak your mind.

Especially at rounds. The nurses, respirologists, attending physicians and surgeons all go from room to room and give an update for each patient. I liked to go to the door and listen, even though it was usually before 7 a.m. (there is no sleep in an ICU). Ask questions when you hear something you don’t understand. This isn’t the time to be shy or remember how you were never really good at math or science in school. If you have heard of something that could work, or could be done differently, say it. If someone is condescending to you when you scream why your daughter is having another emergency surgery, throw them out of the room and get someone else in there (not that I would know anything about that).

8. Push for the next step.

The goal is discharge. If you’re being told your baby can only have IV fluids, push to find out when you can give breast milk or formula from a bottle. If you’re being told she needs a couple more days in the ICU, find out why, and when you can get to the step-down unit. Know that some hospitals/surgeons are more old-fashioned than others. Try to find out what the most elite hospitals are doing, if you aren’t at one. If you feel like your baby is strong, do some research and find out if there are any alternatives to the care she is receiving — not to distrust those who are caring for her, but to give her the most whole, well-rounded care she deserves. Maybe that sounds unfair, because they are the ones who went to medical school! For the most part, I agree. But I also know my daughter and what she can handle. I think about the long-term effects of being in the ICU, so as long as she is stable and recovering nicely, the goal is to get her home as quickly as possible.

9. Know that you aren’t alone. 

Jimmy Kimmel’s kid and mine have the same CHD. No one else I know in real life is dealing with what my daughter deals with. There are Facebook groups for parents whose kids have CHD. There are great organizations like Mended Little Hearts in dozens of cities. And there is me, someone who used to take her health (and her kids’ health) for granted. But now I know better, and I’m sure you do, too. You’ll make it through this. Your kid will surprise (and delight) you. And one day, you’ll go 24 hours or more where you didn’t even think about your kid’s CHD. Maybe that’s years away, but trust me, it will probably happen. Your child will be the light of your life, with whom you have a bond that can never be broken. You share a strength, and sometimes, it feels like you share the same heart. Don’t ever give up.

We want to hear your story. Become a Mighty contributor here.

Getty image by BruceWilley