Monthly Archives: January 2012

Confessions of a Cleft Palate Mama

As an active blogger and Social Media participant, I choose to live my life out loud. In choosing to live my life in this manner, I open myself and my life up for comments and questions. Sometimes, these comments and questions hurt. Sometimes they are meant to cut. Other times, they are not meant to hurt but are instead posed with the best of intentions. The latter often catch me off guard. Such a situation occurred this past week. Instead of dashing off a quick and angry response, I called a friend and nearly ended up in tears as I described the situation to him. I let it sit over night as I thought about the best way to respond. Then I took to Twitter to vent about the situation. Once I took to Twitter, I realized I was not alone in my very justified reaction to the inquiry. Instead of a private response, I choose to handle this in a public manner. There are many other mothers of children with birth defects in this world and all of us battle the same thing deep down inside. All of us are consumed by guilt.

The birth of my second daughter at 35 weeks and 5 days occurred 42 hours after my first contraction. I pushed twice and her screams filled the air of the delivery room instantly as she emerged into my nurse’s waiting arms. Placed on my chest, she continued to scream and writhe about as most newborns do. At first glance, she appeared healthy. All fingers, all toes, you know, the important stuff. When she screamed however, her mouth gaped at the top where her palate should have been. I blinked and tried to check but blamed it on exhaustion. I tried to latch her onto my breast to nurse but it didn’t work. After several tries, on and off, her screaming, me almost in tears, we requested the Lactation Consultant.

The Lactation consultant came in, slipped on gloves, and swiped our 30 minute old daughter’s mouth. “She’s got a cleft.” A swarm of activity buzzed about our room and suddenly there I was, alone, in bed, freshly delivered and still numb from the epidural. No one to talk to, no one to explain to me what was going on. The thoughts started. I knew of a cleft. I knew it meant something was missing. But I didn’t know the cause. I didn’t know why. Then I thought. I thought some more. What had I done wrong?

Early in my pregnancy, I was unable to take prenatal vitamins because they induced severe nausea. Forced to choose between taking the vitamins or not eating, I chose to not take the vitamins. I even tried taking them at night but it was a no go. My depression from the birth of our first daughter also played into the decision to not discuss this nausea at length with my OB. Nausea continued well into the 6th month of my pregnancies. By the 6th month, though, I still was not taking my prenatals. In my depression delusional mind, I even wondered if it would truly affect my growing child’s well-being.

At six months pregnant, however, even if I HAD taken my prenatals, it wouldn’t have mattered. Most clefts form between 4-6 weeks, well before a woman is even aware of her pregnancy. Many clefts are even impossible to link to a specific cause. Our daughter’s specific cleft, a bilateral complete cleft of both hard and soft palate (meaning essentially, she had NO PALATE whatsover), was associated with a condition called Pierre Robin Sequence (pronounced Pea-air Roh-ban). Her jaw was also recessed, her tiny tongue was floppy, and her airway was narrow. In the 1920’s, PRS babies had a slim chance of survival. Today, however, the rate of survival is very high and surgery is available to correct these issues.

I was asked, several times, by several doctors, if I had taken my prenatal vitamins. I lied. Yes, I know I shouldn’t have lied. I should have been honest. But between depression, PTSD, and the guilt now whirring around in my head, rational behaviour escaped me. My partner didn’t even know I hadn’t taken my prenatals until I confessed while in labor with our son. (Hell of a time to confess, huh?)

Bottom line: I BLAMED MYSELF FOR MY DAUGHTER’S CLEFT.

Yes, rationally I know now I am not to blame. There is no family history of cleft. No associated genetic syndrome along with her PRS. It formed well before I could have done anything about it and even Mothers who take folic acid religiously still have a risk of giving birth to a child with a cleft. I know clefts are nearly impossible to see on a standard u/s unless you are looking for them specifically. Intellectually, rationally, I know all of this. and yet, the guilt consumes me. She grew inside me. She grew imperfectly. Logically I am to blame. If she is imperfect, there is something wrong with me. I failed my daughter before she was even born. I failed at motherhood a second time before I even held her. I FAILED.

Mothers of children with birth defects, with special needs know what I am talking about. We feel this every day. We fight like hell to not let this guilt eat at us. We fight against stigma, misinformation, judgment, and ignorance. We live with the stares, with the internal guilt which threatens to rip us apart every second of the day. We ferociously fight for our children so they may have a chance to live a normal life. A life of which they are completely worthy.

My daughter is nearly 6 years old now. She is beautiful. She is intelligent. She is determined, obstinate, and full of perseverance. She is happy. She is thriving. She is PERFECT. She is LOVED.

It doesn’t matter what I did or didn’t do all those years ago. I cannot go back in time to change anything which happened. Even if I could, I would not want to go back in time to do so. Because if I did, I wouldn’t have a daughter who has taught me more than anyone else in my life about the importance of hanging in there, fighting for even the simplest things (like speech, breathing, and eating), or that the most important thing in life is to be happy and keep others laughing right along with you.

Is a Postpartum Depression Defense a Cop-Out?

A few of you who read my blog regularly and follow me on Twitter may remember a conversation I held with a woman who asked at her blog if Postpartum Depression is a cop-out defense when it comes to infanticide. This post is my response. It’s taken me some time to write due to research and the intense emotional aspect of this issue. The post below is lengthy. It is triggering. There are graphic descriptions beginning in the first paragraph. If you are easily triggered, go watch this video instead. Oh, and if you go watch the video? I’m not responsible for the ensuing addiction. (I’ve been listening to it almost non-stop for the past 36 hours.)

[youtube=http://youtu.be/8UVNT4wvIGY]

Humankind cannot bear too much reality.

T.S. Eliot

Since the dawn of time, humanity has grappled with parental induced deaths of infants and children. In Paleolithic and Neolithic ages, infanticide was an acceptable practice, one meant to preserve the balance of man and his immediately available resources. Later, in some cultures, infanticide grew to be gender-based with girls specifically sacrificed due to the cost of dowry required at marriage. Ritual sacrifice, unwanted birth, illegitimate birth, gender disappointment (including financial reasons such as dowry), birth defects or deformities, preservation of ecological balance, and a number of additional reasons peppered several cultures as legitimate reasons for the practice of infanticide.

Common early methods of infanticide included but were not limited to: exposure, suffocation or asphyxia, ritual sacrifice, brute force, blunt force trauma, and others. The most common method was exposure as this freed the parents from any direct involvement in their infant’s actual death according to societal belief. In fact, Romans often abandoned their infants with the hopes they would be raised by others, in which case they were referred to as “foundlings.”

Infanticide, the murder of a child older than 24 hours yet younger than 12 months, is carried out in our modern ages primarily by the mother and typically does not involve brute force or violent methods. The child is instead smothered, drowned, poisoned, or asphyxiated. Some cases do involve more force and more heinous methods.

Most mothers who commit infanticide are in a lower financial class and lack support from family and community. It’s also important to note many victims of infanticide are not first born but instead second or later born children.

Interestingly enough, not many fathers were cited in the research in regard to infanticide. In fact, only four known cases of infanticide with fathers at fault are present in current literature spanning the subject of infanticide. Fathers are far more prevalent in filicide cases which are cases involving children over 12 months of age. In these cases, the father is more likely to also harm the mother and himself in addition to any children involved.

In many infanticide cases involving mothers, a mental health disorder is cited as part of the defense or reason for the crime. Occasionally this directly relates to a Postpartum Mood Disorder, specifically Postpartum Psychosis. But for the mothers who use a Mental Health defense, is it a worthwhile defense or is it a cop out?

Postpartum Mood Disorders have been mentioned in literature since Hippocrates. Within the past several years, research and community awareness has exposed these conditions as real and palpable. While the true cause is not yet known or fully understood, researchers are working to expose the root cause and improve treatment for those affected. To date, we understand some physical roots but experts are still teasing out the specifics of these causes. Increasing social support surrounding mothers has proven time and again to be key to preventing and shortening the Postpartum Mood Disorder experience. Creating awareness and understanding of a less than Utopian postpartum experience lends a helping hand as well. Improving access to knowledgeable professional resources such as psychiatrists, therapists, and the like, also increases the potential for recovery success in families struggling with Postpartum Mood Disorders.

In many infanticide cases, the mothers and their families did not have adequate access to knowledgeable and compassionate personal, community, or professional help. If they did realize help was needed, they were either discouraged from reaching out for it via societal stigma (ie, the husband didn’t want his wife on medication, they were told to get “over it,” or there were religious beliefs preventing the necessary help) or there simply was not adequate sympathetic and knowledgeable care within physical or financial reach. That said, every infanticide case, as with every Postpartum Mood Disorder case, is different from the next. There are important basic factors from each which carry over into the next but the idiosyncrasies differ which make each case nearly impossible to successfully compare in entirety to the next.

From a legal perspective, choosing a Mental Health Defense is more of a crap shoot or a game of roulette. Postpartum Psychosis and Depression, while a real and experienced phenomenon, is not a guaranteed defense against the crime or action of infanticide. It is a transient defense at best, one wholly dependent upon the current legal status of mental health defense within the state and/or country in which the accused mother resides.

The legal definition of Postpartum Psychosis is not congruent with the medical definition. Both are based, at this time, officially on speculation. The DSM IV eliminated Postpartum Psychosis as a classification. The DSM III listed Postpartum Psychosis in the index but not as a separate illness. According to the DSM III, Postpartum Psychosis was thought to fall under: schizophreniform disorder, brief reactive psychosis, atypical psychosis, major affective disorder, and organic brain syndrome. Postpartum Psychosis occurs in 1 to 2 births out of every 1,000, or at a .1% rate. Postpartum Psychosis is considered a medical emergency with immediate treatment necessary. Onset is sudden and occurs within the first 4 weeks after birth, most often within the first 2-3 days. Postpartum Psychosis is the deadliest of the Postpartum Mood Disorders with a 5% rate of infanticide.

The legal definition of Postpartum Psychosis is no different than that of any other Mental Health Disorder as far as fault-finding and therefore subject to the same rigorous testing of any other Mental Health defense. In the United States, this is dependent on the state of residence. Some states abide by the M’Naughten rule while others abide by the A.L.I. test. In three states, Montana, Idaho, and Utah, the Insanity Defense has been abolished even though these states still admit evidence of mental status in cases.

Even with access to a state by state chart of current Mental Health Defense guidelines, it’s confusing at best to determine what your outcome would be in a court of law. In the United States, there is argument against setting a legal specification for Infanticide  as England did in 1922. The current argument against this specification cites lack of a true medical definition for Psychosis along with the potential for a growth of sympathy for mothers who kill and would then invoke the status.

If a mother who commits infanticide invokes a Mental Health Defense, she is not guaranteed freedom if not convicted of murder in the criminal sense but is instead found Not Guilty By Reason of Insanity (a conviction, by the way, not available in ALL states and very dependent upon which test your state uses to determine sanity at time of criminal action). She instead opens herself up to be remanded to a State Mental Institute more than likely with high security. This is not like going home after trial or heading off to a luxurious Club Med vacation. This is dark, gloomy, filled with meds, psychiatrists, therapy, and communing with a population who is equally if not more disturbed than the remanded mother. She is cut off from family, from friends, and from her life, just as if she were sentenced directly to jail. Also, she is continually judged by society, regardless of her convicted status as a psychiatric inmate versus a mainstream high security or possibly death row inmate.

Once remanded to a Mental Institution, the sentenced mother is at the hands of whatever governing body is responsible for releasing psychiatric inmates. This also differs from state to state. More often than not, it is the Court but a few states hand this responsibility to various agencies within their purview. She may also be sentenced to spend a specified amount of years at the Mental Institution despite therapeutic or rehabilitation status, thereby subjecting her to additional exposure to a less than preferable environment for years after conviction just as if she were a mainstream inmate.

The legal and medical diagnosis and defense of Postpartum Psychosis are at best subjective to the diagnostic technologies, sound judgment, and ethics of the medical and legal professionals privy to each individual case of infanticide, thereby further complicating the transient nature of this defense. Therefore a conclusion claiming Postpartum Depression/Psychosis defense as a “cop-out” is erroneous at best as this defense rarely guarantees the defendant the freedom to which she had access prior to her accusation and subsequent proceedings regardless of any legal outcome.

As David G. Myers stated in Social Psychology, “There is an objective reality out there, but we view it through the spectacles of our beliefs, attitudes, and values.” Infanticide has an objective reality in the courtroom. It is a crime. The precise charges depend upon the circumstances of the commission of the actual crime. The defense relies upon the knowledge of the psychological and criminal experts examining the accused. The prosecution relies upon them as well but relies heavier upon the requirements set forth by the law and the justice system to which they are bound. Society at large, meanwhile, is set free to judge, convict, and develop opinions not bound by the court. Our convictions of the accused mothers may be harsher, intrinsically darkened with our own emotions and experiences.

In the end, far more than one life is lost in every case of infanticide. Yes, one life moves on to eternity, but the lives of those surrounding the one lost will never recover. Infanticide is therefore not an incident captured in a vacuum but a ripple vacillating through families and communities like a tornado. Conversations must be held, action must be taken, and the stigma of asking for help signifying failure at motherhood must dissipate if we are to begin to battle the further destruction and loss of mothers, families, and infants to this crime.


Far from perfect

Tousled whisper thin golden hair fell softly around my face as I pulled a stuffed animal from beneath a toddler-sized shirt. Cradling the stuffed creature delicately in my arms, I leaned down to whisper a promise:

“I’m your Mommy. I’ll love you forever. You’ll see.”

In toddler years? Forever lasts two minutes. If that. I repeated this action over and over again as a child. Motherhood, you see, was my dream. My aspiration. My definition of self.

20 something years later, I grew three real babies over the course of four years under an assortment of plus-sized maternity shirts.

I learned birthing a baby was nowhere near as easy as yanking a stuffed animal from beneath a shirt. It was hard work. It hurt. It was traumatizing. And that love? It’s not always there immediately. Sometimes, it’s confusion. Frustration. Anger. Doubt. Guilt. Apologies. Tears. Overwhelming sense of failure. Depression. Obsessive Compulsive Disorder. Anxiety. Post-Traumatic Mood Disorder.

In short, birth and the aftermath is MESSY.

You can’t turn your back on the aftermath. There’s a creature there requiring attention when you want to sleep. Needing to nurse or feed when all you want to do is cry. Wanting to play when you want to sit. Asking questions when you long for silence. There’s this intrusion on your life, this thing to which you may not know how to relate.

What do you do?

Some rush forward, headlong into the fray, successfully.

Then there are those of us who hate those who rush headlong into the fray successfully. Because we don’t know what the hell we’re doing. We’re frozen by fear. Frozen by anticipated judgment of our decisions. Frozen by the potential for failure. The potential of screwing up our kids. Frozen by selfishness. By not knowing what to do – by not wanting to be a parent. By the loss of ourselves. The loss of our lives. Failing to integrate our lives with the needs of this new intrusion, this tiny helpless being imposed upon us. We retreat. We fall back and wonder what’s wrong with us. We wonder why we’re flawed.

But are we flawed? Is there really something wrong with us deep down? Should we be afraid of these “flaws” or should we embrace them?

Yes, there are parents who suffer from Mental Disorders after the birth of a child. I know, I was one of them after the birth of both my daughters. I apologized to my first daughter when she was 7 days old for not knowing how to talk to her. As if she had already memorized Merriam Webster’s entire dictionary, Mother Goose, and Hans Christian Anderson. I refused to leave the house unless I had to because EVERYONE judged me with just a glance. (They didn’t, but inside my fishbowl head, they absolutely did.) I cried. I screamed. Horrible thoughts zoomed in and out of my head.

But I learned.

When my second daughter arrived, we recognized symptoms sooner. Help arrived quicker. Yes, I was hospitalized but it was necessary. I recovered much faster despite the additional complications of her special needs and NICU stay. I started to heal.

Then her brother dropped in as a surprise. I quickly worked on advocacy and care for myself. I was the complication, not the baby. Already experienced in advocacy for others, advocacy for self came naturally. My doctor worked with me, not against me. He treated me as a trusted partner instead of a subordinate. I developed a Postpartum Plan for myself. Handed it to my everyone involved in my life and in my care. I thrived and had a successful Postpartum experience until three months after his birth when all hell broke loose in another area of my life. But because of my careful planning with my postpartum experience, thankfully, I had everything in place I needed in order to deal with this dam break.

I still failed with the hell which slid my way after his birth though, because instead of diving in to advocate for my own care, I waited for someone to dive in and help me. I didn’t ask for help. I waited. Like a fool. I focused on daily living while I waited. Only the necessary – just enough to get by. I buried my issues with the situation at hand and moved forward without dealing with it. I failed to reach for my scalpel and explore the problem. I didn’t dig around to figure out the landscape. So it festered until it exploded, my marriage along with it.

Instead of accepting responsibility for this explosion, I shifted it to everyone else when in reality, I failed to deal with the issues appropriately. Yes, the source rooted elsewhere, but my failure to deal with the aftermath appropriately is ultimately what caused the explosion. No one is responsible for my actions but myself.

Life is messy. It’s not some neatly wrapped package to be displayed in a store window during the holidays like a Norman Rockwell painting. It’s more like a Jackson Pollock piece in progress. Somewhere, eventually, someone will think it’s fabulous and want to buy it. But most will simply see the mess instead of the passionate art deep within.

Bernard Baruch once stated, “The art of living lies less in eliminating our troubles than in growing with them.” Life is art if you just let go of expectations, of definitions, and learn to LIVE instead of satiate the constant needs of others. Selfish? Yes. But ultimately selfless. How? By letting go and living for YOU, you give more of yourself. You learn what brings you passion, you learn your flaws, you recognize them as beautiful, you recognize that yes, even your weakness is beautiful and not something to be hidden away.

For a very long time, I’ve wrapped my problems in wrapping paper, placed them gently and neatly on a shelf inside my head, then walked away. It worked until the room overflowed and the door burst open, dust, paper, and all my issues flying every which way. I’m sitting in the middle of my brain these days, cleaning house. Step by step. Inch by inch. Face to face with issues I thought I dealt with ages ago.

I don’t know who I am completely these days. I’m not sure where I’m going in life.

But I do know one thing – that room in my head? The one with the shelves? Won’t be rebuilt.

Instead, I’ll be grabbing my scalpels and digging around in my messes in the hopes of understanding them before moving on. Yes, it will be chaotic and unrefined. But it will be resplendent imperfection.

I’m far from perfect. I will make mistakes. I will fail. But I will learn from those mistakes and failures. And that? Makes my life the most beautiful piece of art I will ever have the honour of witnessing.

Go.

Thrive.

Be messy,  imperfect, and blissful.

Make your life Art.

There’s no other way to live.