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

PTSD Awareness Day: My Story

My daughter and I crossing the finish line at my first 10 mile event

My daughter and I crossing the finish line at my first 10 mile event

As a female, I can say with 100% confidence that, for me, the anticipation of one day becoming a mother far exceeded that of any other life event. Think about the love and care that toddlers show their baby dolls. The desire for nurturing a baby begins extremely early on.

My dream came true at age 31 when my husband and I conceived spontaneous twins – a boy and a girl.

I am not exaggerating when I say that I never once complained about pregnancy symptoms because I was ecstatic every single day for five and a half months (especially when I experienced kicking on two occasions).

The dream then turned into a nightmare when my son had an umbilical cord accident at 22 weeks and was stillborn at 24 weeks.  My daughter was delivered at 25 weeks, 6 days at 2 pounds, 1 ounce.

I’ve chosen to blog about my experience as June 27th is PTSD Awareness Day.  Post-Traumatic Stress Disorder (PTSD) is most commonly associated with the military, but when you understand the symptoms, it certainly applies to families who have had a non-traditional pregnancy, loss, and/or spent time in the Neonatal Intensive Care Unit (NICU).

The National Institute for Mental Health has a Web page about the symptoms of PTSD which are classified in the following three categories: re-experiencing symptoms, avoidance symptoms, and hyperarousal symptoms.

My symptoms were those of avoidance including emotional numbness, strong guilt, depression, and worry. I had no recollection of them taking my stillborn son away after I delivered him. Contrary to the category name “avoidance symptoms”, I certainly was not avoiding my daughter who was in the NICU for two months.  I would have slept on the floor next to her isolette if it was allowed.

PTSD is not simple to diagnose. Some people with PTSD don’t show any symptoms for weeks or months.  When the symptoms last more than a few weeks, a professional evaluation may be needed.

Another reason I chose to blog about mental health following a traumatic pregnancy experience is because NOT ALL COUNSELORS ARE CREATED EQUAL.  I implore you to try several talk therapy counselors.  If they recommend medicine, do not take it personally.  Our brains are complicated places; you cannot expect to endure a major life event like this without undergoing some chemical changes. This is out of your control, and you have done nothing wrong.  Medicine exists to help bring your body chemistry back into equilibrium, and you deserve that.  Sometimes your OB/GYN or general practitioner will prescribe medicine for depression/anxiety, but most commonly your counselor will refer you to a psychiatrist for that prescription. Again, NOT ALL PSYCHIATRISTS ARE CREATED EQUAL, so visit multiple providers until you feel comfortable.  As a side note, a good friend of mine swears by a technique called “biofeedback” which has improved her PTSD symptoms greatly over the past couple years so you may wish to look into this option as well.

I found it difficult to recognize my symptoms because life doesn’t slow down just because your son is dead and your daughter is in intensive care. Once we were home from the NICU, we weren’t allowed to take our daughter outside of the home (except for pediatrician visits) due to RSV season.  Being home-bound for nearly a year following a month of bedrest and two months of intensive care, can be a pretty big bummer.  I knew, at a minimum, my husband and I needed to see a counselor to begin grieving our son in a healthy way.  In Austin, Texas, the Ronald McDonald House offers a grief group which connected us with other parents which was extremely helpful for me. I got the impression that group therapy was not what my husband wanted at that point in his emotional journey. It’s hard to go through the journey on a separate path than your husband, but it is very common.

Counselors who specialize in perinatal trauma can be especially helpful for parents who are looking to address the negative effects of spending time in the NICU including the feelings of mourning the loss of a normal pregnancy.   My daughter turns six on June 29, and I am finally able to let go of the “dream” and accept my reality.  Reality has all its own blessings – some better than I could have ever dreamed.

Our children deserve to have parents who are taking proper care of their mental health. Our stress affects them greatly as they are developing. When life is so busy that I don’t want to stop to care for myself, I simply remember that I’m doing it out of love (for my son who’s looking down from above) and for my daughter who gives the best hugs ever.

Read “Maybe PTSD Really is just for those at War”

Babs Haller About Babs Haller

Babs (TX) is the mother of premature twins, Jack and Kate. Jack was delivered at 24 weeks following an umbilical cord accident and died. Kate, born two weeks later, spent 59 days in the NICU. From age 4, she has required occupational and vision therapy. Babs is passionate about supporting families affected by loss and prematurity, raising funds for prevention research, and serving as an awareness ambassador. Babs is proud to have been the first staff member of Hand to Hold. View a video about her experience or email her.

Comments

  1. I was thrilled to be having twins for my “last baby” last June. I had no idea what was ahead though. I started bleeding heavily at 6 weeks and continued through the whole pregnancy. I lost one of the babies at 12 weeks. Saw them both on ultrasound on Friday, when we looked on Monday…one heart beat had stopped. I continued to bleed, then was hospitalized when my water broke at 28 weeks. I held on a week, then began to hemorrhage in earnest, due to a condition called placenta percreta. Nora was born at 29 weeks and I nearly lost my life during her c-section and my hysterectomy. I needed 30 units of blood. My recovery + having a 29 week preemie + RSV quarantine + grieving the loss of the other baby has definitely made for the most difficult, most intense time of my life. I did have to go through a couple of counselors to find the right one and I am finally getting somewhere. This is all really hard and we’re all trying to be really good moms even while dealing with all of this trauma. I agree so strongly with this post. Such good advice.

  2. Cynthia Buhler says:

    This showed up on my Facebook page. I have wondered about the effects of a stress filled pregnancy and premature birth.

  3. I have always thought my husband and I suffered from PTSD after our son’s traumatic birth. It continued for years as it was a war zone we could never leave. Thanks for speaking up and encouraging others to recognize and face their own recovery for themselves and their family.

  4. My grandson was born at 29 weeks and weighed 2 lbs. 2 oz. He spent two months in the NICU. It was very traumatic for me. I worried so much about him. Would her live and if he did would he have problems. Just so many things go through your mind. He is 16 months old now and walking around. Seems to be doing great. He’s the sweetest baby. But I look at him and feel like he got cheated out of spending his last two months in the womb instead of a pod. But God is good and I pray we as a family never have to experience this again.I have so much compassion for preemie families. It is a whole new world inside the NICU. Blessings to you as you continue to heal.

  5. Reading posts has made me aware that taking care of myself is not selfish, but necessary in order to take care of my “babies”, now 7 years old. After years of struggling with fertility issues I became pregnant with my twins (IVF). It was a high risk pregnancy, most spent on bedrest. Hospitalized at 31 weeks, I had an emergency C-section and a condition called placenta acreda caused me to bleed out. A trauma code was called, I received hysterectomy and many blood tranfusions, transferred to ICU and hospitalized for weeks. My son remained in NICU for the few weeks I was hopitalized, but my daughter was a NICU resident for 5 months. Born with esophaheal atresia & fistula, she required surgery several hours after her birth….and has had 8 surgeries in total. As a single mom, I traveled back and forth to the hospital daily, never feeling I was in the “right” place since I could not be with both of my babies at once. It’s amazing how many “friends” one truly has, as most were not there to support me (some later telling me they didn’t know what to do). The friends who did reach out stand out like a beacon in he darkness, but still, I sat alone through many of my little girl’s surgeries as my mom cared for my son. Making life altering decisions for my daughter, watching her SATS drop rapidly & being “saved” before my eyes altered my world forever. I saw a psychiatrist at the hospital who initially helped me with the panic, but within several weeks he advised that I should return to work, saying that there was nothing wrong with me & therefore, he couldn’t write me out on medical leave. In a panic I found another therapist who quickly understood that I was not alright to return work. After 5 months in NICU my daughter was released and my twins were reunited for the first time since they were born. Released on an apnea monitor, heart monitor and G-Tube, I attached leads and hung feedings for my 5 month old, 9 lb. baby. 3 days after her arrival home I was forced to return to work for several weeks, or my insurance would cease. I privately hired NICU nurses during the day while I worked, & cared for my twins through the night. There was no emotional support through NICU, but I vaguely remember continuing to call the NICU nurses though the night, needing to connect with someone who understood. There were many emergency hospitalizations, new specialists, outpatient surgeries. The twins were sequestered from October through April for 4 years to protect from RSV. Fights with the insurance company, and getting the services my babies needed left me exhausted. I initially lost too much weight, then began putting weight on rapidly. I didn’t have time to take care of myself, I needed that time to take care of them. Guilt. This was not how it was supposed to go….we’re missing memories, must take pictures, make special times…..exhausted. Going to work, paying bills, learning to do physical therapy with the twins after insurance denied home therapy. Isolated myself from those who would not or could not understand. “You are all home now, get over it”. Fast forward to now. The twins are 7 years old and in first grade. Less medical specialists, no more surgeries. Both twins are bright, accepted into the Gifted Child Society. My daughter has been reading, fluently, since she was 3. They play soccer, climb trees and are kind and loving children. They are very attached to each other. Medical issues are more manageable, she spent half of Kinderarten on home instruction due to chronic lung disease, but she has only been out a few days this school year…she was the youngest in the Nutcracker Ballet, playing both a mouse and an angel. PTSD is silent, but still here. Cognitively I understand the need to take care of me, but it is so hard! I feel guilty. Panic comes too easily, although I am more aware of the triggers now.
    I’m amazed at the strength of you all. How do you take care of yourself? Do others feel guilt, panic? Is it hard to connect with others who have had easy births, no issues, tons of support? In the beginning, I forced myself to join a twin moms group, but could not remain….They wanted to do fundraisers, bake sales, wine & movie nights…..I just wanted to take my twins out without fearing for their health. I’m now starting to connect with some of the “soccer” moms. But I need help with taking care of me, permission to do so, nurturance for myself. Any ideas? I don’t have a lot of support and still get panic attacks if away from twins too long.

Trackbacks

  1. […] in the world of prematurity and infant loss was actually hindering some parts of my recovery from Post-Traumatic Stress Disorder (PTSD).  By defining myself by my loss and holding on so vehemently to my work, I became detached from […]

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