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

By: Megan

Megan — Thu, 10 May 2018 18:47:13 +0000

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.

By: Eldda

Eldda — Wed, 09 May 2018 21:47:58 +0000

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!

By: Rosemary

Rosemary — Sat, 19 Oct 2013 21:32:54 +0000

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).

By: Patti

Patti — Sun, 23 Jun 2013 01:58:21 +0000

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.

By: Sophia

Sophia — Wed, 09 May 2012 18:02:02 +0000

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! 🙂

Warmly,
Sophia

By: Meagan

Meagan — Tue, 08 May 2012 03:21:37 +0000

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.

By: Colin Summers

Colin Summers — Tue, 08 May 2012 02:24:26 +0000

“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.