If your child has a faced a serious medical crisis...

[Rachel]

If your child has gone through some sort of major medical event that required a long hospitalization, is it possible/common for you, the parent, to develop PTSD?

 

My nephew faced a serious medical crisis when he was 6, he nearly died. He was sedated for 2-3 weeks and was in ICU for over a month. He is fine now and a normal 11 year old boy. My sister was an anchor while everything was happening. However, it has been 5 years and when you talk to her it sounds like this all happened a few months ago not a few years ago.

 

It was definitely one of the biggest events of her life that has affected her greatly. I'm just wondering if it is normal to still be grieving (for lack of a better word) and if so if there is anything I, as her sister, can do to help her.

 

I want to be supportive and understanding but I don't know how. It was easier to listen and sympathize when it all in the recent past. I've started to wonder if she doesn't have some sort of PTSD. If so, is there something that may help her. I know there are support groups for parents who have lost children, or those who have had cancer, but what about other less common illnesses?

 

Honestly, I'm not sure if she wants help. I'm going to see her next week so if the subject comes up, I want to be prepared.

[GoVanGogh]

Very, very common.

I have ptsd from my son's premature birth and subsequent nicu stay.

I didn't get help for 10 years, when DS had another health issue and it brought everything back up.

 

eta: I have not been able to find a support group, but I do now have a wonderful network of supportive friends and doctors. That has helped so much. Sometimes I just need to talk and rant and not be brushed off by dismissive comments, like, "just be thankful..."

Edited June 16, 2017 by GoVanGogh

[Rachel]

I think she has dealt with some fabulous doctors and nurses, she has become friends with many of them. It's helpful to know that she may just need to rant.

 

I truly want to be understanding but since he was my nephew and not my son it isn't as easy for me to get what all she went through.

[SKL]

Yes, my sister has PTSD from having a micro-preemie.

[Spryte]

Yes, I think it could be PTSD.

 

We nearly lost my son last summer. His pediatrician, since then, has mentioned that even she feels like she could have a bit of PTSD from what we went through. It was intense. She was not completely serious about herself but was saying that it's common and would not be surprising.

 

Would your sister be open to therapy if you suggested it, or would that be out of bounds for you to even suggest?

[Rachel]

Yes, I think it could be PTSD.

 

Would your sister be open to therapy if you suggested it, or would that be out of bounds for you to even suggest?

I would have to play it by ear. She may be more receptive to the idea if it came from our other sister. When I started this post I wasn't even sure if I was way out in left field.

 

She made a comment on FB today wishing there was a camp for kids who have been through something like my nephew has been through. I really think he is doing ok for the most part, but that she needs something. The comment on FB got my brain churning about things that may be beneficial for my sister.

[Rachel]

Spryte, I don't remember the story with your son but I'm sorry you went through that.

[Arcadia]

She made a comment on FB today wishing there was a camp for kids who have been through something like my nephew has been through. I really think he is doing ok for the most part, but that she needs something.

Since your nephew was seriously ill when he was 6, she might not be wrong about a peer support camp for her kid. I was doing volunteer work as an undergrad at a children's ward where kids were undergoing kidney dialysis and chemotherapy. They do like a support group even after they had a successful transplant. The parents were sleeping overnight in sleeping bags by their kids bed because it was six children to a room. PTSD for kids, siblings and parents are definitely possible.

[Slartibartfast]

I think so, it can be impossibly difficult and can also be hard to convince oneself that the crisis has passed.

[MBM]

Bessel van der Kalk has written about trauma, the many ways it affects our lives, and ways to treat it in his book The Body Keeps the Score. PTSD is discussed quite a bit. He shows brain scans that show what happens during a flashback. It's similar to the event reoccurring. It's an excellent, informative resource if you want to learn more.

[Spryte]

Spryte, I don't remember the story with your son but I'm sorry you went through that.

Thank you. He is ok now. He had viral meningitis. It was horrible. Then he didn't get better, just had crazy, scary high fevers on and off for six weeks, and no one could find out why. He had emergency appts at huge children's hospitals, and no one could get him well. He has asthma, and couldn't breathe. It was a nightmare. It required constant vigilance to keep him breathing. It turned out to be an obscure tick borne disease. I still kick myself for not realizing it - because I have had it, too. What are the chances of that?? Aaaagh. So strange. He's fine now. But anytime he has a fever, I start to panic. His pediatrician doesn't mess around either.

 

I think this is a real issue, PTSD from experiences like that. :(

[SKL]

Yeah, my sister's kid is 6yo now.  My sister still has fight-or-flight every time something doesn't go as expected with either of her kids.  Her baby came close to death so many times, doctors calling meetings about pulling the plug, she (the mom) was living in the NICU, trying to recover from sepsis herself, seeing other babies code and die, so many ups and downs; being away from her older tot, being asked "are you returning to work or not" when the answer rested on whether her baby lived or died ....  Such a lack of control over every thing a mom is supposed to take care of, and now she seems to feel like she needs to make up for it ....

[Guest]

Yes. Absolutely.

[TechWife]

Yes, I think it's very possible. It was very traumatic to have my son so gravely ill. It's indescribable, really. Overall, I haven't had lasting issues, but I have a detailed memory of that month. The first year after his illness was the hardest for me. It was a gradual improvement. I'm grateful for friends and family that just let me talk and tell my story over and over and over. It meant more than I can explain. 

[Guest]

Sometimes the parent who was the main caregiver is the only one who remembers every. single. thing. that. happened. It's not necessarily PTSD, but it's like a burden. It can make the person rather intense when they talk about it, or think about it. 

 

ETA: It's not just a burden the parent carries, it's also a traumatic experience. There is suffering and horror experienced on the caregiver's side, too.

Edited June 16, 2017 by Fifiruth

[LostSurprise]

Yes. 

 

Sometimes things get better, but they're not the same. They can never be the same. Experience--life--grows and changes us. 

 

It's not really grief (IMO). It's an understanding of how fragile our lives are. Most parents have a deep need to care for their child. An intense experience where you can't care for them, you have no control over the things that hurt them, strikes you to the heart. You look for the early warning signs, slight as they are, that allow you to control things. Experience has taught you not to take the smallest things for granted. 

 

 

 

 

[Rachel]

Sometimes the parent who was the main caregiver is the only one who remembers every. single. thing. that. happened. It's not necessarily PTSD, but it's like a burden. It can make the person rather intense when they talk about it, or think about it.

That is my sister exactly. She was at the hospital all but two nights. Her husband is a farmer and they live rurally, so he came often but was not there every moment. My niece who was three at the time spent the summer bouncing around between other family members. My sister feels guilt about that as well. Edited June 16, 2017 by Rach

[Pawz4me]

Yes, I think it's absolutely possible. My elderly mother was in an automobile accident that eventually resulted in her death. It was an absolutely horrid eleven weeks. I can only imagine how much worse something like that would be with a child. Although I never sought diagnosis or counseling, I feel sure that I had something like a mild form of PTSD that took me about three years to (mostly) get over. It's been 4.5 years now and I still feel like it lingers around the edges. Again--I can only imagine how much worse it would be with a child.

[Spryte]

Rach, I think you're a good sister for figuring out what's going on. I hope your sister keeps working through it, and heals. It's hard work.

[Insertcreativenamehere]

 

 

It's not really grief (IMO). It's an understanding of how fragile our lives are. Most parents have a deep need to care for their child. An intense experience where you can't care for them, you have no control over the things that hurt them, strikes you to the heart. You look for the early warning signs, slight as they are, that allow you to control things. Experience has taught you not to take the smallest things for granted. 

 

Yes. This. I have a 5 yo who spent his first 11 weeks in the NICU fighting for his life, came out with a g-tube and tracheostomy, came home to 16 hours a day of home nursing care and proceeded to be hospitalized for 200+ days in his first 18 months. His first 3 years were touch-and-go with numerous points where we could have lost him. One more than one occasion, I saw him crash and nurses and doctors working to bring him back. In another case, he acquired pneumonia while sedated to recover from a complicated surgery and had to be sedated for a total of a month to give his body a chance to recover -- and we didn't know if he'd ever wake up. He's now doing well, but the above statement is so very true. I am not sure whether I have PTSD but I can see how people in similar circumstances would. At the very least, it changes you and how you look at life and the world. 

[GoVanGogh]

One thing about recommending therapy or discussing therapy. Once my dh realized I needed therapy, he was pushing for me to find a therapist and get help on my own. But I couldn't. When I was having a good day, I didn't think I needed help so wouldn't try to find a therapist. When I was having a bad day, I couldn't even get out of bed, I was self medicating and self harming and felt like I was drowning, my head would be spinning with flashbacks. I needed someone else to take those first steps for me. My husband later would say - but you were always so strong and held it together so well... He couldn't understand that my outside behavior on good days was polar opposite of what was going on inside my head.

I have since heard - you don't tell a drowning person to just swim to shore because you realize if they could they wouldn't be drowning, right? The same is very true for depression and ptsd. If you could reach out and get help, you would. But you are drowning in your own thoughts and just can't reach out. The flashbacks with ptsd are awful. It has been 15 years and I still have flashbacks where I remember every single detail and it just cuts to the bone, like reliving every day all over again. My son had feeding therapy yesterday and I was talking to his therapist afterward and starting to have flashbacks. One of the most important things about flashbacks and talking about them is having the other person NOT minimize your experience but talk to you about it with compassion and understanding.

 

Many many hugs to all of you that have lived through traumatic events.

[happypamama]

Yes. I only did the NICU thing for three weeks, but even I will have moments where all the feelings come flooding back. I don't know that it's PTSD, exactly, but for parents who have been through longer and harder battles, I would definitely think PTSD would be possible. I know I saw references to it on support groups and such, and our NICU has parent support groups and such because it's such a hard road to live and process. I hope your sister is able to get some help!

[4Kiddos]

I don't know if it could be PTSD but I can definately see how she could be affected for a really long time. Something traumatic like that really changes you are a person. When I was 7 months pregnant with my oldest my DH and I had a horrible car crash. He broke his back and the doctors didn't think he would ever walk again. I went into labor and spent the next two months on heavy medications to not be in labor while trying to help and support my husband. My husband did learn to walk again with lots of work and I ended up having our son somewhat normally although doctors were worried about him and I had complications from birth. In addition, my parents and my in-laws (they stayed at my house with their children for a little while) and my sister got into a lot of fights with each other and I was trying to mediate all of that. But the weeks in the hospital and the months of slow recovery plus all the drama from family and the worry over my new baby really took a toll. It took me a long time to not panic about my husband or son and their health. Even now, 9 years later, I still think about stuff a lot. I was the "strong one" in the whole situation. I needed to be calm and not panic- to hold it together for my husband and baby's sake. Especially with all the drama of family, I also needed to kind of absorb a lot of the crazy so my husband could just focus on getting well and not on everyone's fears and doomsday predictions. And I needed to be his encourager and support for doing the hard work of getting better and not sinking into depression. Plus, then I had a brand new baby to care for with his needs. Trying to "stay strong" (and rational) for everyone was really hard. Thankfully I had one really great friend who helped me and just let me cry a few times.

 

I feel like the whole thing really changed who I am as a person. There were a lot of good things- my husband and I grew so incredibly close, My faith as a Christian and my trust in the Lord grew exponentially as well. And I learned to treasure every moment with my husband and son. We learned to celebrate well, even little things. Doctors didn't think we would be able to have more children and here I am, pregnant with my sixth child. The Lord is so good to us. Even in the darkest days, the Lord's goodness was so evident. He always provided little joys we could celebrate each day and I am so grateful for His mercy. But there are still some hard things, especially in my mind, that I pray over a lot and turn over to my Savior. I don't really like driving very much still especially on winding hills. And I worry more about the health of my husband (he still has issues) and all my children. I felt really fragile for a long time mentally just because everything was so hard. And certain things bring back the memories still. But, my prayer life and dependence upon the Lord has comforted me and encouraged me so much- even when still dealing with drama from family or health repercussions.

 

Anyway, I don't know if this helps but I could definitely see how she still might be struggling.

[G5052]

I've almost lost DH multiple times, the most recent in March. I'm better, but still find myself uneasy around hospitals. I have flashbacks of him in ICU on a ventilator with the doctor telling me that he had a 50/50 chance after almost losing him three times that day. He came out of the coma and has only minimal effects, but it is still hard. I've been there too many times.

 

And yes, I have PTSD and see a therapist on an ongoing basis. It's tough, and PTSD is something you always carry with you. You have to learn when you're drifting and get help.

[Lizzie in Ma]

Thank you. He is ok now. He had viral meningitis. It was horrible. Then he didn't get better, just had crazy, scary high fevers on and off for six weeks, and no one could find out why. He had emergency appts at huge children's hospitals, and no one could get him well. He has asthma, and couldn't breathe. It was a nightmare. It required constant vigilance to keep him breathing. It turned out to be an obscure tick borne disease. I still kick myself for not realizing it - because I have had it, too. What are the chances of that?? Aaaagh. So strange. He's fine now. But anytime he has a fever, I start to panic. His pediatrician doesn't mess around either.

 

I think this is a real issue, PTSD from experiences like that. :(

 

:grouphug: :grouphug:

Agreed.  You can absolutely have ptsd from experiences like that.

[Carrie12345]

Yes!

Ds's situation wasn't nearly as tragic as some. It actually seems silly in comparison, but didn't feel that way at the time. While I don't think I suffered any real PTSD, I did have a long, horrible depression with lasting effects. So, yeah, PTSD in tragic situations makes perfect sense to me.

[Rosie_0801]

I think there are different types of PTSD. Situational and the kind that doesn't go away.

[nixpix5]

I definitely experienced some symptoms of PTSD when my oldest son almost died at 15 and had to be hospitalized. Once he came home I was so afraid to sleep because I felt like if I wasn't constantly checking on him he would die. I ended up sleep deprived to the point of hallucinations. It was a rough time. I was pregnant with my daughter in the first trimester and she was a twin. We ended up losing one of those babies and I always wondered if it was due from the sheer stress and anxiety surrounding that event. I eventually got past it but it took a significant amount of time before I could breathe again. It was horrifying.

[Rachel]

I'm so sorry that so many of you have been faced with these terrible situations. Thank you for sharing your insight.

 

I'm going to call the children's hospital where my nephew was treated and find out if they are aware of camps or support groups in their area.

[Splash]

Yes, my whole family has PTSD from my daughter's illness and how it presented and was diagnosed.  She and I spent 35 days in the PICU.  Most of that time she was in an altered state, had tubes everywhere, close to death, on 24 hr  dialysis, etc.  Now every time she gets sick  youngest worries we'll go to hospital again and stay along time, older son panics every time he has stomach pain and wants me to take him to the ER. etc.  It has almost been five years now and we've calmed but it still rears it's head now and then.  Especially if dd gets a fever because then we have to go to ER which stresses everyone out because we could end up admitted for observation.

[Paige]

Yes, it's very common. I know others have said it all, but I wanted to add to it. It's also common for the kids who are old enough to be aware of the situation to have trauma.

[Homebody2]

Yes. And it can last a long time. We're almost two years out and I still have major anxiety when things happen that trigger it. Sometimes it's not even a major thing, just something normal that causes anxiety.

 

And it also depends on the illness. If it's something that can return, that is a whole other kind of stress.

 

I never went to therapy, but I cut out the things that cause stress like dealing with medical bills, going to follow up appointments, and responding to dr. phone calls, etc. My husband does all that now. It has helped greatly.

 

Being in a situation where your child is so close to death is unbelievably traumatic. For me it was a strange mix of acting normal and upbeat for my children so that they wouldn't be afraid, but then dying inside of stress and anxiety. It is extremely taxing.

 

I did find support on Facebook, but even that I had to stop. Hearing from others who are in the midst of it triggered things for me, and it was like I was experiencing things all over again.

 

Just listen to your sister. Ask her questions and let her talk. She most likely feels isolated. It is an experience that definitely changes you, and being able to talk about it is helpful. For me, sharing with others helps because I know they are listening, and knowing they've heard me makes me feel like they understand a little more, and that makes me feel less alone.