Infant Surgery – Giving Babies Respect When They Need It Most (Guest Post by Nadine Hilmar)

“My son spent an HOUR playing with a small metal tea kettle on the deck, the kind made for one serving of tea.  He used that tea kettle in so many ways. He opened it and listened to its insides and then experimented with making noise into it. He explored each and every facet of it thoroughly. He experimented with different ways to open it and close it, put different objects in it and took them out. He watched his own reflection in it and then watched himself playing with it while he was reflected in the window. He banged it, rolled it, and talked to it. For an hour while I surfed the net and watched him through the window and my husband and I laughed in pleasure at his very serious play with the kettle… because make no mistake, it was some serious investigation going on!”

After Mama S. shared this wonderful account of her 14 month old son’s progress playing independently, I was taken aback when she added that her capable baby explorer is “almost blind” and will be having surgery soon. She then asked:

“Do you have any tips on how to talk a child through surgery? I am nervous. I bought a picture book (Curious George Goes to the Hospital) and I tell a story about using the pictures, but altered for his age and condition. We talk about how his eyes are and how they will feel better after his surgery and that he will be able to see much, much better. But I don’t know what else to do. I know that they will have to do things to him and he will fight them tooth and nail because, of course, he is so used to his bodily autonomy being respected and he is so fiercely autonomous. I do not want the surgery and recovery to traumatize him. Can you help me, especially with the language I can use in the hospital when they have to do necessarily difficult things to him?”

I could think of no one better to advise Mama S. than blogger Nadine Hilmar. Not only is Nadine deeply committed to respectful care for babies, she’s been there… Her son had heart surgery when he was only 6 months old.

Thank you, Nadine, for your graceful, thoughtful and tender response…

Dear Mama S,

First of all, I’d like to tell you how wonderful I think it is that you are approaching the surgery with so much care and love. I won’t lie to you – it will be a hard time – but if your son knows that you are there with him – it will be ok.

How do I know? My son (who is now 2) was born with a heart defect and needed open-heart surgery at the age of 6 months. It is fair to say that these were the hardest moments I have been through in my life. But when I look back I am also feeling some warm relief. It had to be done. It saved his life. It glued us together as a family.

Now I don’t know how old your son is, but one thing applies for all ages – be honest. Tell him everything you know. Ask the doctors what exactly they will be doing, how he will get his anesthetics and what will happen afterwards. Talk him through it as much as you can. This will not just help him – it’ll help you as well. Because it will make you find words for the worst that is on your mind. And that’s healing.

If he is old enough to talk and mention his fears – let him talk. We are often scared that we create nightmares in our children’s minds by talking about those things too long in advance. The truth is that it gives them (and us) time to deal with those scary emotions. Acknowledge his fears and respond honestly. Don’t try and shrink them by scaling them down. It’ll come back to you afterwards, because it will be painful to some extent. And you know that now.

Once you are in hospital – be only with him. Make sure you are not alone. Have someone to do the administrative stuff for you. Stay with your son and focus on him. Whatever they are doing to your boy, just focus on him. As much as you can, try to shut the people around out.

They might ask you to hold him and fix his arms or legs when they need to take blood or set the intravenous injection. He will not like that. Neither will you, but it has to be done and here is what you can say to him: “Now this will hurt. But it is important so the doctors can examine your blood (or send you off to sleep so you won’t feel anything during the surgery). You can scream as loud as you want. That’s ok. I’m with you.” If he screams and fights – repeat “You are scared. You can scream. That’s ok. I’m here.”

It might be difficult at first, especially if you have doctors around that aren’t that sensitive or patient. But you will get used to it and this honesty and acknowledgment will have a calming effect on you too.

Don’t look at your son as this poor little person that needs help. Try to look at him as someone who is scared as much as you are and you both have to go through this together.

Whatever they do to him – tell him, before, all the way through, and after. It is all you can do. He needs to know what is going to happen. Then during the examinations you can say “Now this is what I talked to you about earlier…” And afterwards you can tell him “This was really hard for you. You got really angry (scared) and you were right about it.”

There is no magic line that will make him cooperate silently. He just needs to know that his fears and pain are seen, accepted and not denied.

The recovery depends on how intense the surgery is I guess. Our son got some really strong sedatives when they transferred him to ICU and then soon they had to slowly withdraw him from them like a drug addict. This had really nasty side effects such as being very nervous and restless which resulted in sleepless days and nights. He wasn’t allowed much food either, so on top of that he was very hungry. It was quite hard for all of us (especially with impatient nurses around) and here he needed lots of love and care. All I could do was just stroke him and talk to him. I couldn’t even hold him because he was hooked onto monitors, drains and wires.

So do ask the doctors about the exact procedure. It will sound terrifying, but the more you know the better. I even read parents’ reports of their experiences with pictures of their children right after surgery. It was hard to look at those, but then when we went to see our son after his surgery I wasn’t THAT shocked. I knew what to expect and had energy left to be there with him.

Now you said that you don’t want the surgery or recovery to traumatize your son. I guess this is the greatest fear of all. I don’t know if and what exactly the surgery has done to my son yet. But I know for sure that it shook him up massively. We left the hospital a week after surgery, then had to go back again because of some bad fever, and after we left for good I could not leave him anywhere for even a minute. He needed me more than ever. I was not used to this because he wasn’t such a clingy baby and now suddenly he would breastfeed every hour, wake up constantly and cry A LOT.

This lasted for two weeks until we had the final talk with the head of pediatric cardiology about the whole surgery and recovery. I took our son with me and it was as if he had needed to ask all my questions too, as if he needed all those answers to relax and gain trust again. So whatever happens in hospital – make sure you know all about it. Get all the information you need to recover yourself too. If you are uneasy he will not be able to calm and recover in your arms.

Once it’s all over – again: relax. And then keep working on it. Don’t stop right there. To make sure he won’t be traumatized, tell him about the surgery afterwards as well: what happened, how you experienced his emotions, how you felt. Go back to the hospital with him, show him where you were (pediatrics, ICU etc.) and talk through it all again. Not straight away, but over the years. The smell, the noises – all this gets somehow soaked up in our unconscious and might pop up at night when we’re asleep. If you take your son back to the hospital every now and then while he grows up it will help him to place those noises, the smell or the aura that might scare him at night.

I guess he will have regular checks afterwards – they will help bring the topic on the table and talk about it.

Trauma gets worse when emotions and experiences sink into the unconscious, are denied and left alone. Make sure that doesn’t happen. Then he won’t be traumatized.

A friend of mine gave me some great advice as well: Use pen and paper as tools for communication. Draw the hospital. Tell him why you are going there. Give him a pen to so he can react to it (and he might!). See how this goes and you might be able to use it as a tool all the way through.

Books are also great. Maybe you could get a Curious George stuffed toy to take so then he really is in hospital with him. Everything.

And no matter how scary this all sounds right now. You will gain strength. When you think you might fall apart you will suddenly have energy from out of space. Believe me.

I wish you all the best and a fast recovery.

Warm wishes from Vienna,

Nadine, thank you again with all my heart.

Mama S, you and your boy will be in my thoughts and prayers.

Nadine Hilmar is a parent educator and family counselor in training. She shares her insights and parenting experiences at A Pikler Experience and also at Mamas in the Making (the blog she shares with friend and fellow Pikler /Gerber enthusiast, Anna Banas´)


(Photo by CeeKay on Flickr)


Please share your comments and questions. I read them all and respond to as many as time will allow.

  1. “Don’t look at your son as this poor little person that needs help.” That’s some of the best advice I have read for this sort of situation, and the suggestion to remain entirely focused on your child. When our son when through a health scare at age 4 complete with EEGs and strobe lights, dark rooms and technicians behind screens, he did great. His only bad moment was when, for a moment, it seemed like his mother made a joke about the situation, to defuse some of her anxiety, and it felt like it was at his expense. He fell apart instantly. Always be on his side, even if it means you are against the doctor, nurses and entire hospital.

    Friends have a child who has needed open heart surgery at 4mos, 2yrs and then additional surgery for a pacemaker, reflux, and other interventions. A lot of what they dealt with only makes sense if you frame it as child abuse: they were meant to protect him and even while in their care their child suffered pain, anxiety and terror. Sometimes with them holding a hand and offering words of comfort.

    Their experience was protracted, but when you worry about a traumatic effect of the surgery and recovery, I believe it is good to keep in mind as a reference. The more power, respect and honesty you give your son, the easier the entire experience will be for him.

  2. I had somewhat major surgery when I was just a few weeks old which, obviously, I have no memory of at all, and very minor surgery (getting tubes in my ears) which I have one vivid memory of. I can remember crying, and being frightened, while someone pulled a mask down that covered my whole face.

    This would suggest that I was traumatized, but really, I was not. My mom talked to me about my surgeries occasionally as I got older, and I would say, proudly, that I remembered it. Fear is normal in alien situations, and it’s not the worst thing ever. Small children are afraid often, and we assume the fear in this sort of situation is so much bigger because WE are afraid, so we think they should be too.

  3. Thank you Janet for seeking out a guest poster, and your friend for writing this wonderful post.

    We are recovering well from surgery. I was able to be present almost the entire time, so I know he was well-supported, right up to the moment he was put under, and they brought me to him once he woke up. It was hard on him. I said, “I know this hurts and is scary! You had an operation on your eyes and they hurt! We will help you feel better. It will pass.” It was tough for awhile until the surgeon gave him more pain medication. That was, by far, the hardest part.

    The ideas for after-care and for continuity of experience– by bringing my son to the hospital and by tellling the story as he grows up are great. I’ve been collecting items (his wrist band, my “parent’s pass” for the OR, etc) and we took photos of the room he was in. I think I will make a memory box so that we can talk about it as he ages and look at some of the items. The advice from you, Janet, in our original conversation– to allow him to help as much as possible– was indispensable. He helped put the heart monitor on his toe. He helped with the blood pressure cuff and the stethoscope before surgery. I was given scrubs early to walk him into the OR and that helped too, because I wore the silly hat for an hour before we were called in, and so all the staff were dressed the same and it didn’t shock him. So some more handy tips. I let him wear the hat too. We played right up to OR time.

    It amazes me that people think toddlers “won’t remember it” so it doesn’t matter. I’ve encountered this so many times. Of course they will be able to remember it, it will become a part of their experience– whether or not they can narrate it. An understanding of the way memory is stored implicitly in the brain is helpful. I really like the ideas about how to help those implicit memories become part of his life narrative, so we will have lots of talk about “that time you had an operation”. Hopefully, this is the only one, although we have a 50% chance of needing more than one.

    Thanks again, and I hope other parents who are facing this challenge can find this article! 🙂


  4. This is a great post. I had heart surgery around 18 months and I can say that it did traumatize me. I doubt that my parents dealt with it the way the author did. I remember being in the operating room and the terror I felt back then. From what I remember and from what I was told, nothing was explained to me at the time. Thank you for how you helped your child through it. I’m sure he will not feel the way I do about it when I think back to that time. Also, thank you for helping other parents going through the same thing.

  5. My daughter had her palate repaired when she was 1 years old and we used very similar language. In regards to dealing with fears beforehand, I think it’s important to remember that most of the fears are actually those of the parent, not child. It is so easy to project and think you’re child will be frightened because you yourself are terrified (what parent isn’t?!). Of course, if you have that energy it becomes a self-fulfilling prophecy. We put a lot of effort into keeping our fears in check prior to surgery and it made a huge difference. While in pre-op she was smiling and dancing and entertaining the doctors and other patients. To her, the hospital was a fun place full of interesting people and weird noises. She was allowed to have that kind of experience because we hadn’t given her well-intentioned messages of ‘it’s ok to be scared.’ I think it’s a good idea to save those comments for when the child is actually scared. We had told her about the surgery beforehand, we had just been very neutral about it and careful not to build up any fears.
    On a practical note, I would recommend with any hospital stay to: bring a good baby carrier (Boba, Ergo, a woven ring-sling, etc.), scented plants (we brought basil, mint and roses, familiar scents she enjoyed smelling during different stages of consciousness), and a playlist of favorite mellow songs along with a speaker dock (we got through the roughest times by gently dancing with her in a Boba while listening to Bob Marley–she was still hooked up to monitors).

  6. Hi.
    I am so glad to see this post. I think about writing for a long time. And about asking.
    First of all, so grateful to see that all is well.

    I am on the other side, if I may say so, for my work, with children.
    I began to get aquainted with RIE and Janet for 6 months now, my baby is 14, and on a personal level I try my best and see a lot of changes. In me especially.
    So I changed a lot of things, because I see things differently. But I would really like to improve in treating my little patients with respect, having empathy and just helping them in what sometimes is a hard time.
    I perform exams and have contact with a child for about 15 to 30 minutes.
    I have a 1 minute ritual in explaining to the little one the steps. If they get upset I try to tell them that they can be, I do not shoosh them, I say yes, I know it can be hard, I hear that you say no, I must continue.
    I feel like the parents see me like a verry weird person sometimes, but I got used to it. Some of my colleagues said they see that I talk differently and the children are more calm with me, and that really made my day.

    So, could I ask you Janet, or your guest, what (other ) advice you have for improving children,s experience at the hospital, or any other similar situation, when we only have a very limited time with them?

    Thank you for a lot of things!

  7. I would further say that doing this type of communication at all times, and certainly at drs appts, build credibility during emergencies.
    My son had anemia when he was young so we did a lot of long blood draws from 9 mo-2years. The drs and phlebotomists always talk about my kids being the best at all things medical. I was proud of them, of course, but I never considered it as investment until my son had emergency surgery.
    At age 3, we went to the ER at a wonderful children’s hospital but we went for a small concern to surgery in less than an hour. With that came people rushing us from room to room, 6 doctors and countless nurses, anesthesiologists, techs all examining his private parts. (We use proper names, thank goodness).They were rushing and shouting trying to get him to surgery in time, and I was the most scared I have ever been. He was flat out terrified and a little embarrassed.
    In the moment, I kept him in my arms until they took him into the surgical room, I maintained eye contact to help him focus on the calm person, I explained EVERYTHING which took some work since at times, I had no idea what was happening. We included him in conversations when we could and he did great. We had a lot of replays later – also for me because I had a hard time processing. But he trusted me when I said something would tickle or hurt or help his hurting. I comforted him when it was bad, I gave him a voice, I advocated for him when the adults were ignoring him.
    For such a traumatic event, he overcame it fully in about a month, which considering I thought it would take longer. We still have followups and he still follows my lead and does the replay but there is no panic, or crying or even off behavior. Can’t recommend this method enough.

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