Hand to Hold's Official Blog: Written by Parents for Parents

Do I Have Delayed-Onset PTSD?

Joy with MomIt’s been over two years since my daughter’s traumatic and extremely premature birth, and I’m just now realizing that I might suffer from a form of PTSD.

According to the Mayo Clinic, PTSD (post-traumatic stress disorder) symptoms may start within three months of a traumatic event, but sometimes symptoms may not appear until years after the event.

The Mayo clinic defines post-traumatic stress disorder as a mental health condition that’s triggered by a terrifying event-either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event. That basically sums me up!

Now, what do I do about it?

You need a bit of background information in order to understand why I believe I now suffer from PTSD. Before I give you that, I want to explain that I am not comparing my experiences with someone who has returned from war or was held captive for months or years, as those are very traumatic experiences, and there are many other traumatic experiences like them. My story has an incredibly happy ending, yet I still suffer from emotions that I believe I never let myself feel while I was in the midst of my own scary and traumatic experience.

Here is my story:

After having three beautiful boys and suffering two miscarriages, I found out I was pregnant once again. My husband and I were very excited and this would be our last baby. It did not matter if we were having a boy or a girl. We just wanted to experience bringing a new life into the world- one last time. No one knew how difficult it would be.

This pregnancy was not quite right from the start. I was bleeding (not spotting) and early sonograms confirmed that the placenta implanted very low on my uterus- possibly directly on my scar tissue from my three previous c-sections and recent DNC (dilation and curettage) after my last miscarriage. We were told this could lead to some complications, but nothing prepared us for what happened.

At 17 weeks pregnant, I hemorrhaged for the first time. It was a major hemorrhage that landed me in the hospital for a few days. My placenta implanted itself smack on my scar tissue (and began to grow through it) and I was also diagnosed with 100 % placenta previa and put on strict bed rest.

Two weeks later, at 19 weeks pregnant (in the middle of the night), it happened again, and this time it was much worse. This hemorrhage (my second of four) is what I believe began what led to my PTSD.

This time- I took two steps out of my bed to get to the bathroom and the blood loss was so severe and quick flowing- that I passed out on the bathroom floor in a pool of continuously pumping blood. I vividly remember the feeling of fading in and out on the floor and believing I was going to die. I was going to die and leave my husband without a wife and my three boys without a mother. How long would the boys remember me for? After all- they were just 7, 5 and 3 years old. Would they resent me forever? I was bleeding to death and was sure this was it…

It was not it!

I woke up to my mother-in-law in the bathroom with me, and the ambulance pulling in my driveway. Once I arrived at the hospital, I began a series of blood transfusions to keep me alive. Much to our surprise, the sonogram showed us that our baby was growing fine despite my trauma and we were told we were having a baby girl. It wouldn’t have mattered if they told us we were having a boy, but it was not an IT anymore, it was a person.

I spent about a week in the hospital this time and was sent home on strict bed rest, again. Insurance won’t pay for a person to sit in a bed at the hospital when it can be done at home, despite the fact that although I stopped hemorrhaging and being transfused after 3 days, I was still actively bleeding. That never stopped.

About a week later- it happened again! I was now lying in a pool of blood much larger than the last, and all of those same feelings returned with a vengeance. Would my boys wake up in the morning without a mother after just a few hours before- they jumped in bed with me to kiss me goodnight? I was cold the point that I was shivering and could not keep my eyes open any longer. That was it…

It was not it!

I woke up to the paramedics putting me in an ambulance and my husband and father-in-law arguing with the driver to take me to the medical center -and not the local hospital. The doctors at our local hospital told us that they didn’t have a trauma center for my needs nor a Level 4 NICU that my (predicted) very premature baby would need- so if I hemorrhaged again, I should be taken to the medical center. Eventually, the ambulance driver relented.

Once at the medical center, I began transfusions and had another sonogram. The baby seemed to be under a bit of stress but my bleeding was the issue. My blood pressure was barely detectable and my hematocrit was much lower than it should be. I was almost 22 weeks pregnant.

Eventually, I was stable enough to move to a room but was transfused for days and not allowed to get out of the bed for any reason. Although the bleeding slowed down to where it was not considered a hemorrhage, I continued to bleed fairly heavily for about a week and a half. I lived at the medical center in constant fear that at any moment- I could begin to hemorrhage and lose my baby and my life. Saying I was depressed is an extreme understatement. I WANTED TO GO HOME! I missed my boys and did not want to stay in the hospital, but I had no choice.

I was (and had been for a while) in TOTAL DENIAL!

Then, at 23 weeks and change, I began my final hemorrhage in the hospital bed- having not even left it for days. My body could not hold out any longer. I went into labor, which made the hemorrhage worse. My husband, friends and family began the 30-minute drive to the hospital and I was already in surgery before they arrived. This time, I left myself a cell phone message that could be played to my children- telling them I was sorry and I loved them, and then I was taken away.

As the gas mask was strapped to my face, doctors told me they would do their best to save us and I should just fall asleep. I did.

Joy opened her eyes on her third day.

Joy opened her eyes on her third day.

My daughter was born a micro preemie at 23 weeks, weighing just 1 pound and 4 ounces (575 grams). She was 11-3/4 inches long. She was immediately taken to the NICU and had a breathing tube inserted down her throat. I didn’t know any of this for over twelve hours, since that is about how long it took me to wake up after my delivery, hysterectomy and dozens of units of blood.

My placenta had grown through the scar tissue in my uterus and attached to my bladder and bowels and they all had to be separated during surgery- following my hysterectomy (this is called placenta percreta). I lost a great deal of my blood volume during the surgery.

My story ends here as my daughter’s begins.

She spent 121 days in the NICU before coming home. I didn’t get to hold her until she was over 1 month old! I could only sit by her isolette and think about all of the things that could go wrong and how she could be taken from us.

She had hundreds of X-rays, intubations, extubations, central lines, intravenous lines, feeding tubes, blood draws and transfusions, and major infections requiring high doses of antibiotics.

The feelings of guilt were overwhelming. I also felt terrible guilt because I had 3 other children at home, who needed my attention for those 4 months that my daughter was in the NICU. I felt guilty each time I pumped, because I either had to leave my daughter’s bedside for 25 minutes or interrupt my playtime at home with my 3 boys.

Siblings and Joy

Joy with her brothers.

I would bring the boys to school/camp each morning then spend the day at the NICU until I left to pick up my boys. We would have dinner and take baths and then I would put them to bed and go back to the NICU for another 4 hours at night.

I never slept or did anything for myself until close to my daughter’s first birthday, although she only spent 4 months in the NICU. As many micro preemies do, my daughter needed to be monitored while she slept and on numerous occasions I had to suction out her throat so that she could breath.

At the time, I thought I could overcome anything and had no time to pay attention to any emotion I may have had.

I had a job to do.

My daughter had pneumonia 3 times since she came home from the NICU and required hospital stays. It was during these 1 to 2 weeks admissions to the hospital, where my daughter was put back on oxygen and lay limp in her bed, that I finally REALLY reflected on what we had all gone through and how scary it was AND STILL IS.

Now, over two years later, I realize that I have some scars.

Aside from the large vertical scar that travels down my abdomen, I also have many scars of the mind.

I cannot watch any television shows or movies where someone is bleeding and may not survive. When I do, I instantly have flashbacks to lying on the floor during a hemorrhage and then I have nightmares for days. Whenever I have to take my children to a hospital (and I often have to take my daughter- because most common colds turn into pneumonia- due to her very premature lungs) I begin to tremble and slip into a depression for days after- even if my children are all fine. I’m constantly worried about my children, to the point where I’ve become overprotective and I limit their opportunities for exploration and personal growth and development by keeping them away from large crowds from October through May. Any respiratory virus brought home by the boys can cause my daughter to get very ill, but they should be able to live too!

But to top it all off, I now feel angry that all of this happened, and guilty because I feel like I should have done a better job staying pregnant. It doesn’t make sense, but this is how I feel.

I truly thought that things were fine and that I WAS FINE! I didn’t think that I had any emotional scars from Joy’s birth until a few months ago. Hell, I wrote and published a book (which I used as my own personal therapy) called From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds– that came out a few months after Joy’s first birthday- about our experiences. Writing it was great therapy and I recommend it to all who need to heal, but new issues have surfaces since my book was completed.

I thought I had it all together and had moved on. But new fears, sadness and anxiety began to set in a few months ago and it took me a while to figure out what it was.

Although there is not one particular study that gives a specific number, it is estimated that anywhere between 60 – 70% of women who have a child in the NICU will experience PTSD. Men are also affected – it is estimated that up to 33% of men with a child in the NICU will experience PTSD, although they are affected differently are less likely to seek help. I would imagine that these numbers are similar for parents who have experienced a traumatic birth.

Now back to my original question…

What do I do about it?

According to PTSD expert Dr. Matthew Tull, there are a few things people with PTSD can do to help themselves heal:

  • Research and learn about PTSD. You are better able to tackle or cope with a problem when you are informed. Done!
  • Lean on friends and family. Establish supportive relationships with people you trust and who are willing to be there for you. This is hard for me because most don’t understand where I am coming from, but I’ll try to lean on those who care the most.
  • Learn relaxation skills. Relaxation can be a powerful tool in managing the fear and anxiety that accompanies PTSD. I plan on beginning yoga. Wish me luck!
  • Write about your experiences and feelings. Writing has been found to be very helpful, especially in expressing and organizing experiences surrounding a stressful event. In addition, writing can be a positive experience because you have control over how much information you want to disclose and how far you want to go. This truly did help me but I guess I needed something more long term- hence this post!
  • Join a support group. In my case, a NICU or birth trauma support group would be the best. I joined one but did not give it my best effort. I guess I should revisit this or start my own!
  • Call and make a consultation with a therapist. This may be next. I’ll keep you posted!

About Jennifer Degl

Jennifer DeglJennifer Degl is the mother of  four – including a 23-week micro preemie –  and author of From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds. You can connect with her on her blog, Facebook, or via Twitter.

Comments

  1. Wow! Thank you so much for sharing this. As I approach the anniversary of when things started to go down hill with my pregnancy and my sons first birthday I have had massive anxiety and I could not figure out why. My son is healthy all things considered… we are alive and fine… I couldn’t figure out why I have been feeling so anxious. This post shed some light on it and made me realize maybe I am not as “fine” as I thought. Thanks for letting me see that I am not alone in my feelings!

  2. You are not alone. Just this week driving my son to preschool there was an accident. Once I heard the blaring sirens and saw the ambulance fly through the intersection I lost it. Just started crying in the car. And everytime I wash my hands at the hospital’s therapy center the smell of the soap brings me right back to NICU room 6. I could come up with more examples. They hit hard and fast and they take my breath away. Thank you for sharing your story.

  3. I’ve definitely had this experience, too. I was at the hospital a few weeks ago for a follow-up appointment with my son when an announcement came over the intercom, “Neonatal Code Blue, fifth southwest.” We spent nine days in fifth southwest, which is antepartum. (This would mean a woman gave birth IN her antepartum room, which would be sudden.) My hands clamped down on the stroller handle and my heart skipped a few beats and I had to call my wife to get her to tell me I wasn’t crazy. I wrote a little more about it on my blog: bit.ly/1Nh2aAZ

  4. Waking the Tiger: Healing from Trauma by Peter Levin is an excellent book with real exercises to help cope with a whole list of symptoms of PTSD. I highly recommend it. After suffering for years (from a completely different life event) have regained a normal life.

  5. Hang out with all of your ttmf friends more, it will help just sharing as well, with those of us who get those anxieties and feelings. I could not watch TV for two years!! I get it!! hugs…and well written!

  6. I am shaking all over as I read through what you’ve written. I recall the time when my own micro preemie came into the world and the succeeding months of hospital stay until she was discharged. She celebrated her first birthday last Christmas and it’s a great, great milestone for our family. Thank you for sharing your own experience. It gives me hope that I am not actually losing my mind when thoughts of her survival and safety cross my mind almost every hour. All the best to you and your family.

  7. Thank you for this, I had my babies 11 months apart and both were in the NICU. My little boy was in for 10 days after arriving 6 weeks early but My little girl was in for 10 weeks after suffering from fetal hydrops. As she was in the intensive care, even if she was having a good day, you could be seeing other families having their worst. There was no time to focus on anything except her. I have suffered with awful nightmares for a few months and have moments were I feel so lost and upset. Reading your story as made me feel so much better, you sort of think you’re going insane. I hope you and your family are doing well. 🙂

  8. I went through PTSD after my second daughter (full-term) was born. Just reliving all the memories of our long NICU stay, and regretting all the “typical neword” experiences I didn’t have with our first daughter. A few therapy sessions made a HUGE difference, as well as knowing that I wasn’t going crazy (it just felt like it). Our girls are 3 and 6 now and it’s mostly subsided.

  9. Thank you for being brave and sharing your story. I too suffered from PTSD following the birth if my first daughter and much of what you just listed in your action plan were in my survival arsenal as well, but what really did it for me was EMDR therapy. I credit it with saving my life, both literally and figuratively. Please look into it, I promise you went regret it. Love and more love to you. <3

  10. Oh, Jennifer! This breaks my heart. Not just because I know what it’s like to feel this way, but because I know we can feel better. I think that it starts with being more gentle with ourselves as mothers. Of course you have PTSD! How could you experience all this and not? I felt so tremendously guilty when my son was born too early. (I was actually apologizing to the nurses.) I hated that I brought this pain on my baby and my family. What happened wasn’t fair. And there’s is no good reason for it. But I’ve learned how to cope with that. And I’ve learned how to cope with the idea that I can’t bend the universe to my will – no matter how hard I try… and I’ve tried. I can live with that. But we all deserve to fell better. And with help (counseling, empathy, and medication work for me) we can feel better. You deserve it. Much Love to You and Your Family.

  11. Linda Welsh says:

    Time heals, counselors and loving family are essential. EMDR and TRE have both helped me greatly following my little girl’s 7 open heart surgeries, she is 19 now, has been a rich life. The terror doesn’t last forever, believe in healing, it is real.

  12. Very moving story! I think if you have to ask yourself if you have ptsd, you already have your answer. I also had placenta accreta, and nearly lost my bladder. I am a single mom by choice (smc) and went thru fertility treatments to conceive. I was hospitalized several times, the last time at 31 weeks when I had an emergency c-section/hysterectomy when my twins were delivered. My son was in nicu for 2 weeks, my daughter, 5 months. After 3 months the hospital psychiatrist, who I sought out so I could remain on medical disability, told me to go back to work…put my son in daycare and visit my daughter (who had a total of 9 surgeries and coded in front of me) after work. I told him that I was in a constant state of panic as no matter where I was I was never with both of my babies. I know you know that feeling of being torn between your boys at home and Joy in the hospital. I ended up finding a female psychiatrist who quickly wrote me out out and diagnosed me with ptsd. I, too, want to write a book as the experiences seem to be someone else’s at times. I had to return to work the same week my daughter was released from the hospital. For medical insurance purposes, I had to work for a month before taking off for 2 months. I hired a nicu nurse during the day, and changed lines, ran monitored g-tube feedings and attached the leads to the heart/apnea monitor at night, then worked the day. It is 8 years now. The first 4 1/2 had lots of specialists, hospitalizations. Looking back, I don’t know how I did it. Even now, I am afraid that those reading this post will push away….like many in my life who didn’t know what to say or do. I left meetings where people came in proudly announcing how suck they were, but didn’t want to postpone the meeting. Didn’t they know that could put my baby in the hospital. It’s 8 years. My twins are in the 2nd grade. My daughter missed 1/2 her kindergarten year, on home instruction due to chronic lung disease. But during the last 2 years, she hardly missed a day of school. She plays softball, performed in the Nutcracker as an angel, and goes to art classes….her favorite. Both twins have been accepted into the gifted child society and takes enrichment classes. My daughter, Cheyna. Was reading fluently by age 4, but I didn’t notice for about a year. She laughed when I finally figured it out telling me she wondered when I ‘d figure it out! But still, almost every week I have a dream that includes the hospital. I get flashes of memory when the light is just right, and the sun is setting, remembering the exact nicu room she was in when the light was the same. PTSD has many faces, but the worst (for me) has been the misunderstanding, the downplay of what happened every step of the way. I do not live in the past, but those experiences are woven into my being. I haven’t found a support group where, perhaps, others would share similar feelings and not judge mine. I am happy you have the support to get u thru the many faces of ptsd, the symptoms which may lie low at times, but pop up with an intensity of fire. Thank you for sharing. Enjoy your beautiful little girl.
    Linda

Speak Your Mind

*