Monthly Archives: November 2012

Yes, I Ate a Cracker: On Hyperemesis (and Autism)

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From the time I was a young girl, I always wanted to be a mother. I assumed that I would have my children young. (I didn’t.) And, because I never suffered with any “women’s troubles”, I also assumed that I would have a wonderful pregnancy. I had visions of pregnancy as a joyful time of eating bon-bons and wearing cute maternity clothes. For some reason, even the idea of childbirth itself didn’t trouble me particularly. I had a lot of faith in Western medicine and was confident an epidural would take care of all that. So, when I found out that I was expecting, I was thrilled. I raced out to buy my obligatory copy of What to Expect When You are Expecting. And I made a long list of possible names.

Exactly six weeks and one day into my pregnancy, I felt a little ill following breakfast. I raced to the bathroom to throw up - and never stopped.

At first, I was sure that it was typical morning sickness. I tried various wisdom remedies. The ever-present cracker, ginger tea, sucking on a lemon, motion sickness bands, over the counter nausea syrup, etc. I’m fairly certain there is nothing I didn’t try. A couple of weeks later, the nausea and vomiting was steadily increasing. I wasn’t functioning at work. I was there, but often yakking in the bathroom. I had attempted to keep my pregnancy quiet at work, but my obvious sickness made it an open joke.

Everyone, including me and my doctor, thought it would go away. But it didn’t. After a couple of incidents of in-office IV fluids, I was prescribed Phenergan. It barely touched the vomiting, but did nothing for the nausea. What it did do was keep me so heavily sedated that I could sleep away a lot of my misery. But my performance at work suffered — a lot. I was just showing up, in between days of not. After being admitted to the hospital for a couple of days due to dehydration and high ketone levels in my urine, I was prescribed the anti-emetic Zofran. (Zofran is often used with chemo patients suffering from nausea.) At that time, it was over $1000 a month - with insurance. I ended up finding a Canadian pharmacy and had it shipped to me for around $350 for a three-week supply. On Zofran, I was down to once or twice a day vomiting. That enabled me to keep things down a bit better, but the nausea remained for the duration.

Please do not ask a hyperemesis sufferer if she has “tried eating a cracker”.

It was during that time that I learned the name of what I really had. Hyperemesis Gravidarum. Hyperemesis occurs in less than 2% of pregnancies and is marked by dehydration, malnutrition, and other serious complications. In its most severe form, renal failure and even death can occur. (Although, with the advent of total parenteral nutrition and medications, this is rare today.) The writer Charlotte Bronte (Jane Eyre) is thought to have died from hyperemesis. Approximately 10% of HG pregnancies are terminated for the health of the mother.

Emotionally, I sank to levels of self-pity that I’m not proud of. Even though I knew that having a terminal illness or chronic condition wasn’t at all the same thing (for my having a light at the end of the tunnel), I suddenly empathized with everyone who had ever endured chemotherapy. I wasn’t in pain. I still don’t know what day in and day out pain feels like. But I know all about the effects unrelenting nausea and vomiting.

I was vomiting blood for 8 months. Your throat gets so irritated, that you pass blood when you throw up. I sported petechial hemorrhages all around my eyes for the duration of my pregnancy due to all the vomiting. And I popped a few blood vessels in my eyes as well. Riding in a car can feel akin to hurtling down a roller coaster. There were few, few moments at all that I wasn’t distinctly aware of being pregnant. Simply because I was so sick. I felt the urge to throw up every moment of every day - without fail. It was suffering on a scale I am shaken to remember. (I don’t think there has ever been a woman quite so happy as I to be induced with Pitocin. Ironically, for all the misery of the pregnancy, my delivery was a breeze.) But for months afterwards, I experienced depression. My body was greatly weakened. Four days after I delivered, I was 20 pounds less than when I got pregnant. It took weeks for the nausea to slowly ease and for me to be able to eat anything resembling a full meal.

The inventor of Zofran has assuredly been reserved a nice pad in Heaven.

But what exacerbated the misery of it all was the ignorance of family, friends, and acquaintances who’d never heard of hyperemesis. When it is explained to them, many respond with suspicion. It is assumed that hyperemesis is just a pretty name for the morning sickness that most pregnant women experience at some time. So, sufferers get a lot of unhelpful advice. If only I had the proverbial dime for every cracker discussion I endured. People suspect what they don’t understand, and they judge accordingly. I was given guilt trips for losing weight, told that I wasn’t taking care of my baby by being so nutritionally depleted, given condescending pats, assured it would go away, and even told that I was “lucky” they didn’t treat me with what they used to do for hysterical pregnant women — locking them in a dark room until they no longer complained of nausea. It’s bad enough being sick all the time. It’s even worse to be told that you are imagining it or you are a hypochondriac — simply because it is beyond their understanding.

Following my first pregnancy, I was erroneously told that the likelihood of experiencing hyperemesis again was less than 10%. (The actual figures are 50/50 and possibly higher. After two hyperemesis pregnancies, it is all but certain you can count on a third.) Wanting another child close in age to my first, I didn’t take the risk seriously enough. Hyperemesis pregnancies should be planned. There are high-risk obstetricians with experience in dealing with it. There are even now 24 hr. Zofran pumps that a woman can wear and go about her daily life. It is really important to be in the best shape possible before getting pregnant again. I didn’t. I got pregnant again less than one year later. The second pregnancy was much worse, finally resulting in me having to go out on disability until delivering.

Your next question is likely to be one I have wondered for some time. No, there are not any reported links between autism and a hyperemesis pregnancy that I can find. However, hyperemesis is not exactly a popular subject of scientific study. You can find message board threads of HG moms wondering the same thing. Since the causes of autism have not been anywhere close to being sorted out, and - since the causes are likely to be varied and many - I doubt anyone could say. However, there is some suggestion that an “environmental insult” during pregnancy could be a cause of autism. I have my suspicions, and I’m curious to see what science comes up with regarding a possible link between the two. I don’t think it is beyond the realm of possiblity that nutritional depletion of its mother could be an “environmental insult” to a fetus. I will say that the concern is yet another reason I have chosen to not have the third child I have always wanted. My children were well worth the hyperemesis, but I would not want it to endanger a third child.

It has been three and a half years since my last pregnancy. And I’m still not back to normal. I have no idea why. I still wake up most mornings slightly nauseous until I get moving. Motion sickness is an everyday problem for me. I have a hair-trigger gag reflex and am much more sensitive to smells and medications. Now I understand why bulimics have trouble learning to eat again. It’s because vomiting is a reflex that can be hard to break when you are in the habit. My mind knows I’m no longer pregnant. But my body will not forget. And, while it has occurred to me that I’m simply crazy, there are too many similar postpartum reports from other women like me to think that it is all in my head. Hyperemesis can, apparently, have effects lasting for years.

A Zofran pump delivers a constant dose of medication that is often more effective than pills.

I wish that I had known more about it before going through it twice. I adored my doctor and midwives. But, in hindsight, I know I would have been better off seeing a specialist with experience in dealing with hyperemesis. (I sure wish I’d known about that pump.) But it taught me a lot of things. It taught me compassion for those who suffer. It taught me to assume nothing about subjects I’m unfamiliar with and to avoid judging others. It taught me how to endure. And I learned a lot about who my friends really are.

If you want to learn more about Hyperemesis Gravidarum or you are seeking to prepare for a pregnancy with it, I highly recommend visiting HelpHer.org. In addition to information, you can find support there as well as a list of doctors with experience in treating patients with the disorder. That could make all the difference for you for someone you love.

Note: I am NOT saying that autism is caused by hyperemesis. I’m just saying that I am a human being and that human nature is to wonder. Since there is no definitive list of causes for autism, and since they are likely to be many, I am merely saying that I wondered if one day a link between maternal nutritional deficiencies and autism might be found. Obviously, being a mother of an autistic child, I would never dream of attempting to “blame” women for their children’s autism. For anyone insisting upon being overly sensitive, I might point out that there are, in fact, causes somewhere and that wishing there weren’t won’t change anything. In the end, science will tell the story. :)

Morning Has Broken: We Have Words

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“There’s something happening here. What it is ain’t exactly clear…”

-Buffalo Springfield

Progress is deceptive. When you keep your eyes on the road ahead, the journey seems oh-so-long. Long enough that you perpetually wonder if you’ll ever reach your intended destination. It’s only when you stop going and going and stop to look back that you realize the distance you have already traveled. And, sometimes, that realization is all you need to get a second wind. To find what seems impossible may be in the cards for you after all.

Callum started Pre-K ESE in the spring, right after he turned three. Placing him in that room on the very first day was the scariest thing I’ve ever had to do. Other parents, teachers, and therapists kept telling me that I would be amazed at what the structure of the classroom would do for him in terms of language and social development. I don’t think I really believed them. Not because I don’t have hope for my child. I do. It’s just that hope can sometimes be a dangerous thing. It can let you down. With a severely developmentally delayed child, you have to walk the nearly invisible line between acceptance for what might be and hope for what could be. When you do one, you risk denying your child the other — in an endless cycle of “I need to do better”.

But since returning to school this fall - to the same teacher’s class - we cannot deny that Callum has made progress. On all fronts.

A few weeks ago, we began receiving reports of words from school and daycare. And not just randomly repeated words out of context. But words Callum knows and made the choice to use. “Peesa” (pizza), “mi” (milk), “pees” (please), “I sowwy” (I’m sorry), “tantu” (thank you), “goo ja” (good job), “nana” (banana), “come ah” (come on), and more. It seemed to happen all at once.

But it hasn’t been just words. There’s been a kind of strange give and take in our verbal interactions with him — even when he’s just babbling. His babbling sounds like sentences in a foreign language. And they have a distinct tone — silly, happy, etc. The amusing one is when he is displeased. You can tell you’re in big trouble with that one as he furrows his eyebrows, raises his voice, and emphatically babbles his displeasure. That one inevitably follows being told that he may not have more chocolate or jump on the couch. Or both. The important thing is that he is clearly responding to what we say. He responds when asked a question and usually when told to do something. And it’s often like a conversation. It’s different from before - in some way I can’t exactly qualify. But everyone sees it.

And then there are the social differences. His teacher, whom we think the world of, reports that he is understanding and following classroom routines. He sits in circle time, follows the yellow line when walking, and holds is backpack. No, he isn’t mastering any academic goals yet. But social conformity precedes learning. It’s a foundation on which we can build.

He’s also getting into things more now and starting to get in trouble. It gets harder each day to look dutifully stern when he gets a naughty twinkle in his eye before attempting yet again to break the rules. He knows he’s being bad - and he is delighting in that knowledge.

And when he isn’t looking, so are we.

If I had to boil it down to one description, it would be this: Callum — the boy - is in the room with us more and more, not just his body. He isn’t playing quite yet, but he has shown more interest in some toys. He is requesting things other than food (such as bringing us his shoes when he wants to go for a drive). He is swaying to music on occasion. And discovering that he can open things and make a mess.

Callum, in short, is emerging from behind the wall of autism. Yes, I know the wall will always be there. I know it is a part of him. He will always be different, and he will always slip behind that wall sometimes. But he is learning that things on our side are kind of cool too. He is seeking us out and realizing that we will consistently meet his needs — especially if he makes them known to us.

And with this comes a level of wonder you can’t begin to know unless you have a child whose developmental milestones aren’t guaranteed. Each one met is precious and must be celebrated without the assumption of the next to come. Living in the moment takes on new meaning when patience becomes a choice over a virtue.

No, nothing this little boy does is taken for granted. Every word, every interaction, every anything he didn’t do before becomes a blessing. And that, in itself, is a blessing I could have never anticipated just a few short years ago.

Yes, we have words. But with that, we have so much more. We have hope. And a song in our hearts — whose tune we have sometimes forgotten.

Morning has broken, like the first morning
Blackbird has spoken, like the first bird
Praise for the singing, praise for the morning
Praise for the springing fresh from the Word

-Eleanor Farjeon

Ask Me No Questions: On the Child I’ll Never Have

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When you have a young child with special needs, it is only a matter of time before you are asked a very personal question. Are you planning to have another child?

Some would consider this a straightforward question. Others would call it rude. I’m of the opinion that it depends upon who is asking. If it is a close friend, that’s okay. If it is an acquaintance, then it is presumptuous. (And if it is a nosy, judgmental person, then it is outrageous.) It’s not really fair, I suppose, to accept the question from some but not others. Then again, some people have a key to my house - but not others. Most things in life are simply relative.

It seems like a simple question. People ask it all the time of newlyweds — though they shouldn’t. But, when you ask it of a special needs parent, the question is loaded with implications other than the cost of diapers. In our case, the question is echoed by many other questions — all silent, yet screaming.

Don’t you want to try again for a “normal” child? Don’t you want to give your “normal” child a playmate? Are you going to take a chance on having a child with the same condition? Can you afford another child with the same special needs? What if…?

“What if” indeed.

The decision to not have another child is a very personal one, for all parents — but especially for those with special needs kids. And one that doesn’t come with a correct answer. I wouldn’t dream of suggesting that another parent make the same decision. It depends on who you are, and it certainly depends on your circumstances. Regardless of the choice one makes, it is fraught with worry and the judgment of others.

I always wanted at least three children. Being an only child, I envied those with large families. When Sean and I married, I made certain he was on board with this plan. Even during the worst of two hyperemesis pregnancies, I was still determined.

When my second child began to show signs of autism, however, we put off the decision. Between shuffling our NT child to preschool and ferrying our son to therapy, a third child seemed out of reach. Until now, we just left it as a big maybe.

I turned 39 recently. And, although many women choose to have children later these days, the risk of conceiving a child with genetic abnormalities increases with age. And the current statistics are that a woman with one child on the spectrum has a 1 in 10 chance of having another.

But the truth is that our family - on both sides - is filled with so much “otherness” (ADHD, autism, gifted, mental illness, and more) that I believe the odds are significant that we would have another “other” child - perhaps one even more severely affected by…whatever.

If money were not a factor — say, I won the lottery? I probably would. If I could ensure that, no matter what, a third child would be cared for comfortably and with dignity, then…maybe. But even then, I must consider the needs of the two I already have. One who is already greatly impacted by autism and one that will possibly bear the burden of responsibility for him one day. To take a chance that a third child would not be an additional responsibility for her - simply because I want one - is, I think, unfair to Bronwyn. She deserves to live her own life, have her own children — and not care for mine. No,I don’t consider Callum a burden. And, no, his future is not yet written. He’s beloved, and I wouldn’t trade him. But one person’s adult special needs child is eventually another’s burden. That’s reality. For me, I have decided to stop with two.

But that child I’ll never have? She had a name. Already. I knew she would be a girl, and her name was Kerith Grace. I am sad I won’t have her. Another baby asleep on my chest in the wee hours of the night. Another first smile. Two more soft chubby arms wrapped around me. Another set of pattering feet on Christmas morning. More laughter. More love.

Motherhood has been the greatest blessing of my life.

This isn’t a tragedy, I know. It’s merely one of those things in life I will yearn for and not have. But, unlike going on safari or digging up artifacts in an ancient city, this is a dream whose scent I know. And remember. I can still hear the little coos of my nursing babies and feel their tiny little hands against my skin. This yearning is tangible and primal in a way that other unrealized dreams will never be.

So, yes, I will miss this nonexistent child. As I’m sure do countless other mothers and fathers whose choice to not have more children is a a sad one.

But here is what I do have. And it is already so much more than so many others have. I have had the joy of growing two new lives within me. Nurturing and loving them. Every single day of my life, I get to hear my little girl yell “Mommy!” excitedly at the end of the day and have the exquisite pleasure of snuggling with my little ones each morning and night. That’s no consolation prize. It’s a blessing. Two, in fact.

But having had to make this choice, I am now aware of why nosy questions about future children shouldn’t be asked. Of anyone. There are many reasons - not all visible -why someone might be unable or unwilling to bring a child into the world. Some painful, all private.

No, this question is best left unasked. If happy news is on the horizon, you can be assured you’ll be invited to the shower anyway.

As You Are: An Open Letter to My Son

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Callum planting one on his pesky big sister for the very first time.

Today, I am honored to be guest posting on Childswork/Childsplay. Some of my favorite bloggers are regular writers for Childswork/Childsplay, so I was thrilled to be asked. :)

And, if you will be so kind as to remember Callum in your thoughts and prayers, I would greatly appreciate it. He is hospitalized right now for abdominal pains and tummy troubles. It’s been a long night for us both and hard on this mama’s heart to watch him suffer.

Please click below to read the entire post.

Dear Son,

I don’t know if you will ever be able to read this. I don’t know that one day you won’t be able to read books of all kinds and share your thoughts with me. You are only three years old and are mostly non-verbal. You are autistic – which means you are affected by a neurological condition that impacts communication and processing. At this point, much of your behavior is influenced by autism.

But here’s the thing. Every human soul enters this world with a personality that is unique. And, although you certainly will change between infancy and adulthood, the part of you that is you is apparent from the start. Yes, autism is an inseparable part of who you are. But it isn’t all of you, baby.

Most children are loved by their parents. That is the birthright of every human being. But not every child is liked by her parents.

Continued…