Premmie Parent Pain

It's no wonder that parents of premmies end up with psychological problems. They have been through a true-life trauma.Trauma gets into our hormones and neurotransmitters and messes with emotions, thoughts and feelings and other bodily functions.

Chronic sorrow

This means that parents go in and out of a sorrowful state, but never resolve it. The sorrow can be triggered when a child does not meet expected milestones. Parents think they have come out of their sorrow and are getting on with normal life and then something is triggered and they are back "there" again, with sadness and disappointment, fear, anxiety and worry.

Chronic sorrow can make parents use less than useful coping mechanisms - like becoming a super mum or a total expert in everything. Parents with chronic sorrow live with 'guarded hope', that things will improve but actually, in their heart of hearts, believe it won't. They can think they are paranoid, crazy and obsessed, and ungrateful for having a healthy child.

"B & K seem to get along best with the full-term kids that are a few months younger than their chronological or corrected age. For me this is an emotional rollercoaster. Sometimes I see them and think they are really not that different to their peers and minutes later I am feeling a stab of sorrow that they need help to make the gains they've made. Why can't I just be thankful and leave it at that? Could chronic sorrow relate to the anxiety we premmie parents feel about the unknown future?" (Jan, The Early Edition)

"I can't resolve these feelings. I can't stop comparing even though I try, I just can't shake the feeling that something is wrong. I put on this façade that everything is OK, Z's come so far. I come away with a sick feeling after seeing other kids so I try to avoid being around them. This sounds so dumb but the fact that there's a term to describe what I'm feeling helps me a lot - I don't feel like such a bad parent." (Amy, The Early Edition)

"Chronic sorrow does (usually) lessen with time, at least that is my experience with it. However it is always right below the surface, and it doesn't take much to have it all come flooding back. But I'm grateful to have it below the surface most of the time now. Life has become easier for all of us as a result." (Helen The Early Edition)

"I know that when I saw the post about "chronic sorrow" something jumped within me and said "That's me! That's me!" It is not just about the isolated event [of the birth]. It is the cumulative experience of the nine years of infertility with the loss of several babies, it is the 21 weeks of pregnancy, it is the months of repeated hospitalizations for S and a two-and-a-half marathon of fear, anguish, medical duties and isolation. Paradoxically, I just can't seem to shake it now that S is doing so well. It weighs on me, as do the extra pounds on my frame from the experience. Now I'm finding it as hard to shed the sorrow as it is to shed the pounds." Susan, The Early Edition.

"Sometimes I wonder if I have forgotten how to let myself feel relieved. I am not sure I have that trust yet...Did you read the post asking when we were sure our children would live? God, the emotional answer to that question is that I am not there yet. Jan, The Early Edition. 

An ordinary room is like an obstacle course to a blind person. So too can the everyday world of the premature parent be full of hazards- hazards that do not exist for other parents. Some parents may avoid the "mine-field" of encounters with the "normal" world because they trigger anger, pain, fear, distress, sorrow or depression

• seeing new mothers and their babies, or a breastfeeding mother
  
• watching parents take their baby home
  
• being around very pregnant women
  
• hearing birth stories or complaints about the third trimester
  
• hearing news about a pregnancy, especially one near the premmie's due date
  
• family gatherings with babies
  
• revisiting the hospital
  
• watching baby commercials
  
• reading parenting magazines
  
• reading parenting books that don't mention premmies
  
• attending playgroups
  
• attending birthday parties, especially first birthdays
  
• visiting parks and playgrounds
  

A is now 21 months old. I had a difficult time when she was in hospital and for months following. After her first birthday, which was depressing for me and happy at the same time, I began to do some major healing. The first year was behind me and A was gaining weight and developing well. Anyway, today I had a flashback and it was really scary because I didn't expect it and I didn't think it would have such an impact on me and my feelings... I didn't think it would hit me so hard at this stage of the game,.. (Andrea, The Early Edition)

Recently, something happened that really hit me hard, and it seemed so totally harmless. H had to go in for an overnight observation last week. Anyway, I walked into the cafeteria to get dinner for my wife and I. As soon as I walked through the door I was just about overcome with emotion. It seemed that I was right back in the NICU experience. I got breakfast there so often that the cafeteria lady knew what I ordered. I can remember sitting there, trying to eat my breakfast waiting for rounds to end so I could see my son. Having my son readmitted didn't bother me nearly as much as walking into that damn cafeteria. Go figure. I think these type of things will hit us at the strangest times. (Timothy, The Early Edition)

When R, my son was about 16 months I began to have anxiety attacks. I don't think I ever dealt with all the pain and heartache of the NICU and it just culminated in these panic attacks which I still have sometimes.

"I think we get it in doses. It's a long healing process. It's all so hard, but it's a natural progression of becoming well again and it will get easier. The pang in the heart is definitely still there though." (Kris, The Early Edition)

"When your baby was born prematurely, birthdays can evoke emotional and complex feelings. On the one hand, there is the joy of having your child alive and with you now. On the other hand is the sadness and confusion of loss and grief. Memories of the traumatic birth and survival in the NICU are present in a parent's mind, whether voiced or not. The border between our dreams and fears and our present reality merge again on these dates  Thoughts of what might have been come closer to the surface around this time.... Birthdays and other holidays are times when [we] experience this dual tug of emotions between the past and the present."(Allison Martin, Early Edition)

"Our twins were born at 29 weeks...and I was unable to see my boys for the first five days, except one time for five minutes as they were being transferred to NICU at another hospital. Their birthdays always brought mixed feelings...it seems to bring back all the memories of that rough time when they were so sick.

But now they are 9 years old, and I notice birthdays are less sad these days. I'm always so thankful when I look at them and see what healthy, happy boys they are now. It's true, as so many of us say, you'd never knew they were so tiny to start with and went through so much" (Jacque, Early Edition)