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.

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