Home / Archive by category "Uncategorized"

In Defense of the Other Side

So, vaccines don’t cause autism.  We’ve known that for years, but now that people are actually getting the measles, we’ve started to care.  Enter the news, social media, and talk shows with the “I told you so’s”.  And yes, I shared Jimmy Kimmel’s video of doctor’s sarcastically telling people not to get their health information from celebrities on Facebook.  I must admit, after having daggers shot at me when in a group of other autism parents and admitting I’m pro-vaccine, I felt a little superior when the world at large came around.

Yet, the more I hear the arguments to convince parents to vaccinate their children turn into sarcasm and name-calling, I can’t help but feel angry.  For years, I’ve watched news programs and talk shows present pro- and anti-vaccine arguments as equal, because a good fight on TV is more entertaining than the presentation of accurate information.  I hear parents being called stupid for listening to celebrities instead of their doctors.  As much as I agree, if we shouldn’t listen to celebrities, why are they given air time to discuss health issues? It feels a little like the magician belittling his audience for being fooled by the illusion he created.

The anti-vaccine movement is ultimately fueled by fear, and mistrust of the medical establishment, both emotions which are promoted by the media daily to fuel ratings.  Think about the last promo you saw for the evening news.  Have you ever heard, “Coming up at 5, learn some common sense health information that you may find useful”?.  Chances are, it was something like, “What thing that could kill you is lurking in your pantry?”, or “What are THEY not telling you?”

Believe me, I’m not advocating that the American medical system should be the only, or for that matter the most important expert in regards to health issues.  As a midwife, I remember days when almost every woman who gave birth was given an episiotomy.  When I was born, my mother was administered twilight sleep after insisting that she didn’t want it.  Although the practice of obstetrics has come a long way, I still sometimes disagree with my physician colleagues.  When we disagree, it’s not because THEY are trying to hide something, want a monopoly, or are being paid off by drug companies.  They simply have different education and experience than mine, both are which an important contribution to the women we care for.

There’s a latin expression I heard quoted on my favorite TV show, “The West Wing”:  “Post hoc ergo propter hoc”, which means “after this, therefore, because of this”  This is how the autism/vaccine and most misinformation regarding health care, begins – both things happened therefore there must be a causal relationship.  It’s human nature to believe our own eyes, to believe what seems logical.  But, as my college psych professor would say repeatedly, “correlation does not equal causation”.  The correlation argument is even more difficult to counter when people are desperately searching for meaning.  For example,  I frequently care for women after having a miscarriage, either immediately after, or years later.  The reason I see women with miscarriage so frequently is that unfortunately, it is a common event.  1 in 5 of all pregnancies end in miscarriage.  I’ve so often heard women tell me what caused their miscarriage.  I’ve heard everything from “I was straining to have a bowel movement”, to “I had a pap smear” to the most common one “I was too stressed”.  Sometimes a logical explanation will help women understand that nothing caused their miscarriage; for some, however, once the belief is there, nothing will change it.

So where does one turn to educate themselves?  How do you decipher the volumes of information available  in the internet age?  Obviously I can’t review every source of information available, but there are a few sources to be wary of.  I think you know my opinion about celebrities acting as experts from my comments above.  However, I would also expand that category to include TV doctors.  I’m not saying they’re not real doctors, or even good doctors.  If you had an appointment with Dr. TV in his office, I’m sure you’d get excellent care.  Remember, if a health care professional is on TV, especially if they have their own show, the paycheck is being signed by producers, not a medical establishment.  Although you may come across some useful information, the primary goal is entertainment and ratings, so view the information through that lens.

Second, beware the lawyers!  If you’re on social media, chances are you’ve had a solicitation pop up on your Facebook feed, asking if you took a certain drug and have had A, B or C happen.  What’s not as obvious is if you google something, often the lawyers’ website will pop up and have the appearance of legitimate information from a healthcare organization.  Most law suits against pharmaceutical companies capitalize on the “after this, therefore, because of this” theory.  Often the specific drugs being sued are commonly used, the damages are common ailments, so by the law of numbers, there will be a great deal of clients who have used A and suffered B.  Currently there are dozens of websites by legal firms trying to sue the manufacturers of Zofran, a medication used for severe morning sickness.  They are recruiting women who have used Zofran during a pregnancy in which they carried a child with cleft lip/palate, or a heart defect.  From a business strategy, it’s brilliant.  Many women use Zofran, and those birth defects are two of the most common anomalies.  I’m not about to defend large pharmaceutical companies or tell you that this drug is 100% safe.  As I tell all my patients, we can only tell you anything is safe in pregnancy to the degree that it’s been studied, which is never 100%, and you must weigh the potential risk of taking the drug vs. the risk of the disease you are treating.  My point is that when you see information designed to scare you, consider the source, and share your concerns with your healthcare provider.  If you are not sure who is sponsoring a website, look at two things.  First, what other information is on the website? Does it include other topics with a general theme, like pregnancy, or other medications?  Or does it just contain information about the one topic you just googled, or maybe just a few random topics?  The randomness is usually because it will include other lawsuits they are recruiting for.  For example, on one website, I saw information about Zofran, knee implants, and an antidepressant.  The other tell-tale sign is a number to call.  While there are places on Web MD and other legitimate healthcare sites to type in a question, if there is a phone number it’s usually well hidden, not in bold on every page of the website.

Lastly, beware of who the author is, even on “legitimate” websites.  Often, websites with professional articles, like Babycenter.com, will also have posts from laypeople, and if you search for a particular topic on a website, you may not realize you’re looking at someone’s post, not an article from a professional.  Even when you are aware you are reading posts from the general public, when you see what appears to be a critical mass of people all saying “I did A and then B happened”, it’s difficult to believe that A did not cause B.  You may find information that merits more research, and discussing with your healthcare provider.  Just remember that if both A and B are common, in the world of cyberspace, there will statistically be a lot of people with both A and B.

If you are the type of person that likes to do your own research, there are some ways to go about it.  First, start with the big guns:  websites like WebMD, babycenter.com, and others who are “too big to fail”.  They want to maintain their credibility, and because of their popularity are able to solicit high quality professionals.  Also, look for the main medical organization or society for the field you’re interested in.  Although they mainly exist as a resource for healthcare professionals, they often include information for patients.  For example, the American College of Nurse-Midwives has a website just for women:  http://www.ourmomentoftruth.com.  The American Congress of Obstetrician’s and Gynecologists has a tab for patients: http://www.acog.org/Patients.  Hospital websites are another great source of information.  I frequently use the Boston Children’s hospital website as a resource for parenting my own children.  There’s a search engine where you can find information on any pediatric topic.  http://www.childrenshospital.org  I also love http://womensmentalhealth.org, produced my Mass General Hospital.

In the internet age, people have access to the actual medical journal articles, which in previous years would have been very difficult to come by.  However, health care professionals have taken an entire semester or more just to learn how to read these articles, so even if you can get past the jargon, understanding the meaning can be difficult.  I’ve listed below a few articles which guide the general public on evaluating scientific data.  After cautioning gathering information from personal blogs, I’m about to do just that, so first a disclaimer:  I’ve read these articles and found them helpful, and am in no way endorsing the other material on the website.

In the end, I support everyone’s right to consider options and make healthcare decisions they feel is right for them and their children.  I would only encourage you to consider the source of your information, gather as much information as you can from various sources, and find a health care provider who will collaborate with you as a member of a team.

 

Further reading:

http://www.skepticalraptor.com/skepticalraptorblog.php/how-evaluate-quality-scientific-research/

http://violentmetaphors.com/2013/08/25/how-to-read-and-understand-a-scientific-paper-2/

Why I’m a Bad Mother and Proud of it

I’m not keeping quite to the theme of the blog, but I know there are at least some of you out there who can relate.  And for those of you still pregnant, remember this and know infertility not only does not make you a perfect parent, it does not oblige you be one either.

Why yes, that is my child. Yes, the one whining or not listening, or just being completely obnoxious. Yes, that’s me, the bad mother, trailing behind, not hitting, giving a time out, or whatever punishment du jour you think I should be handing out.

I saw those kids and those moms before I had kids. The little brat causing a ruckus, and the complacent mom. Obviously, his behavior is his mom’s fault. Obviously, if she were more engaged in discipline, he would be a perfect gentleman. Well, I’ll let you in on a little secret – maybe the child’s behavior caused his mother’s inaction, not the other way around. Maybe mom is trailing behind, the glazed over look on her face, because nothing she can do will work, and she’s too exhausted to try anyway. She knows waiting it out may be the most expedient end to the outburst.

One of my favorite shows of all time is The West Wing. President Bartlett used a Latin expression, which he translated as “if then, therefore, because”. It’s what my college psych professor meant when he said, “correlation does not equal causation”.

My son has autism spectrum disorder. The high-functioning, highly verbal kind, or as some would say, the fake kind. As a good mother, I would describe his behavior as challenging. As the bad mother that I am, I’ll be honest and say that much of the time, he’s a little bastard. His frustration tipping point is somewhere around the love child of John McEnroe and Naomi Campbell. Sometimes it’s because he doesn’t get his way immediately. Sometimes it’s because his sister walked next to him. Sometimes he will whine and scream over the most ridiculous minor event that happened three years ago.

Sunday was one of those days, and as a bad mother, I’ll admit that it was totally my fault. I made the mistake of scheduling 2 events on the same day. Evan doesn’t quite know he’s autistic, so when you ask him if he wants to do something entertaining, the 7 year old is not going to say, “Gee, that sounds really fun, but I think I should pace myself”. So Saturday, we went to a Halloween parade with trick or treating during the day, then a cub scouts event in the evening. Sunday was OK for a while – he played video games, rode his bike, and played outside. Then he spent hours crying about nothing that could be fixed. It started when one of the other kids at cub scouts (who may also be autistic), through the goodness of his heart told Evan they were both different and he was glad they were friends. When my husband told me about it, Evan got upset because he didn’t want me to know. Then he started crying that he didn’t want to be different. We tried the whole speech about how everyone is different, everyone is good at some things and not at others, etc. Consolation was not to be had. We eventually moved on. The rest of the afternoon was spent crying and tantruming about whatever came to mind: he was bored, he wanted to watch the Mario Bros TV show (which we didn’t have), and the big one was that the house did not look spooky enough for Halloween.

Evan’s favorite ride on our last trip to Disney was The Haunted Mansion. As some of you know, when kids on the spectrum like something, they REALLY like it. Evan could spend hours just listening to the soundtrack from the ride. When I don’t have the Mario theme repeating in my head, I hear “Grim grinning ghosts come out to socialize”. He’s been asking for a while to make our house haunted for Halloween. I bought some “mummy” lights, but he thought they looked like gingerbread men and weren’t spooky enough. We tried making ghosts, but the perfectionist in him didn’t like the way they turned out. So we spent the better part of Sunday afternoon listening to him be miserable with no way of helping him. No distraction or comfort could stop him.

So today, at the store, I did what any behavioral therapist would tell me not do – I bought more “spooky” decorations. Yes, I rewarded the tantruming and whining. I knew I was doing it when I pulled out my American Express card. I thought about leaving the decorations behind at the store. Won’t he learn that his extreme behavior will get him his way? Shouldn’t he learn that life isn’t fair? Shouldn’t he learn to appreciate the decorations he has and be grateful? Yes, he should. I always said I would raise my hypothetical children that way. Well, here’s the thing. Life is unfair, and life is going to prove that to Evan over and over again. Every time he struggles to participate in activities that come easy to other kids; every time he gets made fun of; every time he misses out because he’s had enough. So he gets a haunted house. If he grows up to be a complete menace to society, you can all say it’s because his mother bought him light up pumpkins and scary skeleton decorations when he was 7.

So yes, that’s me trailing behind the obnoxious kid. Yes, I have tried time outs. Yes, I have tried ignoring, punishing, rewarding, etc. Yes, I’ve tried to discipline the autism out of him, but it’s still there. I’m not punishing him because it doesn’t work. I’m not doing anything because I don’t know how to help him, and I’m tired of watching my child suffer. I’m not silencing him because his tantrum may be the only way he has of communicating. And yes, stranger in the mall, I’m sure you could do better than the mother who’s read countless books, made reward charts, visual schedules, consulted doctors and behaviorists, and still gets bruises from some of his worse tantrums. But sorry, my son has a bad mother, and I guess you’ll have to find a way to live with that.

#IHadAMiscarriage

Except the problem with that hash tag is, I had two. They were both IVF pregnancies. With the first pregnancy, I had ovarian hyper stimulation. For those who may be unfamiliar, my ovaries exploded like jiffy pop, my abdomen filled with fluid, and I had A LOT of pain. I went to a doctor’s appointment the day after my positive pregnancy test to be evaluated for this, and although I could not stand straight, I had a smile on my face and was floating on air. Until it all came crashing down with the hcg numbers that didn’t rise. Then they did. To make a long story short, there was 8 weeks of: you’re pregnant, it’s non-viable, it might be viable, it’s non-viable, it’s too early to do a D&C, schedule a D&C, the D&C didn’t work, you need another one. Overall, the most miserable two months of my life. Intellectually, I would never claim that my baby had more right to survive than anyone else’s. But at the time, did I feel more entitled than the teenager who got knocked up in the back of a car? You’re damn right. At least with the second pregnancy I was spared the hyperstim, but the process was pretty much the same.

Today is pregnancy and infant loss remembrance day. I’ve read about women lighting candles for the babies never born. After my second miscarriage, I saw a genetic counselor that suggested planting a tree or making a donation in memory of my lost children, but I never did. I understand women who grieve for a lost child they never got to meet, but I never felt that way. Without getting into politics or religion, I had a deep feeling that my baby was still out there waiting. It was something I felt, not thought.

So, did my beliefs make for less grief? While immeasurable, my grief was as present and heartbreaking as I imagine anyone’s is. No, I didn’t believe there was a soul dead and never to be born. I felt I was failing my child, leaving him trapped in the in-betewen, not fulfilling his purpose to come into this world. I grieved for a soul I knew I was connected to but may never meet. Like a loved one gone to war, not knowing if they will ever return.

The experience of miscarriage robbed me of more than those two pregnancies. I see TV shows and commercials with all kinds of pregnancy announcements. When we started planning to have a family, I thought about how we would celebrate. But there was no champagne, no big announcements, no celebrating at all. The first call from the nurse was, “You’re pregnant, but the hormone levels are low”. There was no joy; there was just the fear of another miscarriage. Then the next level went up, then the next and the next. There was never celebration, only cautious optimism. There was no surprise ultrasound photo to tell our families. There were phone calls where congratulations were met with the response, “It’s still early”. Over time, we had ultrasounds, my belly grew, and I felt movement. I was able to feel joy and excitement about my impending birth. Always, though, looking over my shoulder, the little feeling in my gut that it could all be taken away.

Did having two miscarriages and three years of infertility make me a better mother? Very doubtful. There are days I can’t believe I’ve managed to keep these little people alive for 5 and 7 years. Does it make motherhood easier? I have nothing to compare it too, but I hate to think this job can get harder. No, miscarriage and infertility did not make me Clair Huxtable. There are days when I can’t even measure up to Rosanne Conner. There are just moments – when my son learned to ride his bike without training wheels; when my daughter gives me a “crusher kiss”, that I remember how it almost wasn’t. Miscarriage robbed my of so much, but gave the gift of gratitude.

I don’t know what’s real. Maybe my kids are the only souls with a karmic attachment to me. Maybe there really are two souls who never made it, and hopefully are at peace. To them, I’m sorry I couldn’t help you finish your journey, but your family is OK.

Depression and Pregnancy

I just read a fantastic article from Andrew Solomon:  http://www.newyorker.com/tech/elements/depression-and-pregnancy-dilemma.  I’ve quoted this writer’s book, “Far From the Tree” in a previous post.  He accomplishes the arduous task of presenting both sides of a dilemma beautifully.  Aside from his writing skill, you should read this because some of you are now suffering from depression, anxiety, or some form of mental illness.  This condition may have predated or been caused by your struggle to have a baby, but some of you may be surprised that the surge of hcg in your blood stream did not magically make it disappear.

I won’t reiterate the risks and benefits or taking antidepressant medication;  the article does a great job but ultimately you should speak to your own providers about your best treatment options.  I would like to add the two cents that it’s taken me years of experience to earn.  First, I’ve spoken in previous posts about why the pregnancy test, or first ultrasound, or second ultrasound may not make rainbows appear and all your lost socks found again.  Pregnancy can be a stressful time for anyone, especially after infertility, made worse by the fact that those close to you assume you’re “all better” and not understand the support you still need.

However, even if the stressors seem lifted and you are looking at color swatches for the nursery, depression is a real illness and takes time to heal.  With the recent suicide of Robin Williams, there’s been a lot of talk on social media and in main stream media that depression is a “real” illness.  I think using “real” is misleading, the correct phrase would be to say, depression is a physical illness.  The brain is part of the body.  There are neurotransmitters and chemicals that all interact to affect emotions and responses to stress.  To make an analogy:  a person developed diabetes from drinking a vat of soda every day.  Then he stops;  the cause of the diabetes is removed.  The diabetes generally doesn’t just go away without at least a significant amount of time, and probably some other lifestyle measures, such as other changes to the diet and exercise.  And his doctor recommended he take medication to keep his blood sugar under control while he was working on those other interventions.  Just like the diabetic, the biochemical reaction in your body that caused your psychological symptoms won’t suddenly snap back into place once the initial trigger is removed or resolved.

Am I advocating that every pregnant woman with depression stay on medication?  Not at all.  Just like other illnesses like diabetes and hypertension, there are other options.  Mental illness is a more difficult illness to treat because of the snowball effect into other aspects of your life.  You’re depressed or anxious so you can’t sleep, which in turn lowers your serotonin levels and increases your psychological symptoms.  If you’re anything like me, you stress eat and crave chocolate when depressed;  the effect of sugar on mood is being documented by more and more research.  Or you may want to try some stress relief activities like meditation or exercise, but when you can’t get out of bed, the treadmill’s not going to follow you!

My advice to all my patients is that mental illness, wether episodic or long-standing, is a multifaceted condition that requires more than one approach.  If you’re not taking medication, consider that you may need something at least to help you turn the corner and try eating healthy, sleeping well and exercising as an ultimate treatment.  If you’re on medication, try not to let that be your only treatment.  Like diabetes or any chronic condition, diet and lifestyle matter!  I’m not saying you need to start growing a farm on your veranda, but even modest changes of adding more fruits and vegetables and decreasing processed foods can help.

Like infertility, mental illness is varied and widespread.  If I may simplify, women reading this post may fall into three categories.  The first two are women who have had mental illness and then developed infertility; and women sought treatment for depression during infertility and are now considering wether to continue medication.  There’s a third group I especially want to reach out to, and you know who you are.  You’ve been depressed and anxious for months or years, maybe because of your infertility, or perhaps for other reasons.  You never sought treatment because the pregnancy was the light at the end of the tunnel.  You’ve spent the bulk of your recent life in a “I’ll be happy when…” limbo.  And now “when” is here, and the clouds didn’t part.  Please don’t keep waiting for tomorrow, and seek help.  There are many health care professionals who can help you with or without medication.  You may want to try some of the lifestyle measures I’ve mentioned or possibly some other alternative treatment like acupuncture. It may mean letting those who love you know where you’re at and asking for help.  I encourage you to do all three;  even if you’re dead set against medication, a professional can help navigate you through treatment choices and give you other great tools to use.

If you’re not sure, please find out.  A simple thing is to use a depression screening tool:  http://www.beyondblue.org.au/resources/for-me/pregnancy-and-early-parenthood/edinburgh-postnatal-depression-scale.  Massachusetts General Hospital has a great website with resources for women with mental health issues:  http://womensmentalhealth.org.  Help may look different to everyone, but everyone should get help.  You worked tirelessly to get to this point, and you deserve it!

A little summer break

Join the Movement!!

“What is it like to be a midwife with infertility?”  After the usual annoying questions like “Have you thought of adopting?”, that’s the question I got asked the most.  It was hard to answer;  after all, I don’t know what it’s like to be an architect or a banker with infertility.  I’d guess that most women feel like they got a slap in the face when they are told they may never have a spontaneous conception.  Mine felt like a pie in the face and a kick in the ass – just as painful, with the added humiliation of being the butt of someone’s joke.  Most days I trudged through the endless cycle monitoring, hormone shots, ultrasounds and blood tests the same as everyone else, just trying to stay sane, or a relative facsimile thereof.  However, like most women, there were pauses after a failed cycle or miscarriage when I would ask “why me?”.  Why me as a woman who, although will never be canonized, tries to be a good person.  And, why me as a midwife?  I’ve spent the bulk of my adulthood trying to help women stay strong while bringing life into the world.  Wasn’t it my turn now?

Besides the “why me?” cry of the victim, there was another “why me?”.  Spiritually, I tend to waiver between the two schools of thought: that a divine presence has given you a specific challenge that you need to learn from, or that life is random but the point is to draw meaning from the struggles we have.  I just read a quote from the Dalai Lama:  “There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’ Either way, I started to ponder in the midst of infertility what my contribution should be.  I guess helping women who were pregnant after infertility was the obvious course.

Once I started thinking about how pregnancy might differ after struggling to conceive, I started really talking to my IVF patients about their experience.  Although I always thought I was a good listener, there was a difference now.  I don’t know if I actually started asking different questions, or that maybe women just get a sense of someone in the same trench.  Either way, I started learning a lot from my patients.  I also started looking online and as usual, Resolve provided some of the few resources for women in this subgroup.  (http://www.resolve.org/support-and-services/pregnancy-after-infertility/myths-and-facts.html).  At the time, in 2005, there were a few blogs but not much else.  It has been great to see more and more resources turn up over the years, like PAIL bloggers http://pailbloggers.com, and Resolve’s discussion boards http://www.inspire.com/groups/living-after-infertility-resolution/.

The thing that troubled me then, still troubles me now:  the virtual silence from my own community.  Most of the medical literature on ART pregnancies have to do with medical risks, and what little there is on psychological well-being is inconclusive.  In my own tiny corner of the obstetric universe, I try to educate my colleagues when the opportunity arises.  The reaction has been mixed at best.  In our practice, we offer patients shared medical appointments for various reasons, including prenatal care.  I tried to start a group specifically for women getting prenatal care after infertility or loss, but the lack of support was prohibitive, including one of our reproductive endocrinologists who thought that women should be “normalized” once they’re pregnant.  I think that sums up the lack of understanding from the medical community and the general public.  It’s also the reason I believe the psychological studies conclude that a woman who has experienced infertility is either a:  more likely to be anxious or depressed, b:  less likely to be anxious or depressed, or c:  has the same incidence of anxiety or depression during pregnancy.  We as a medical community and a culture like to lump experience into either disease or healthy, normal or abnormal.  Infertility influences a woman’s relationship with her body and therefore pregnancy.  It’s not bad or good, normal or abnormal.  But it’s there, and our unique experience deserves to be acknowledged, otherwise, we feel anything but “normal”.

I believe Andrew Solomon said it best in his book “Far From the Tree”, referring to the ongoing debate about wether conditions like autism or deafness are diseases or identities:  “We often use illness to disparage a way of being, and identity to validate that same way of being.  This is a false dichotomy.  In physics, the Copenhagen interpretation defines energy/matter as behaving sometimes like a wave and sometimes like a particle, which suggests that it is both, and posits that it is our human limitation to be unable to see both at the same time… Many conditions are both illness and identity, but we can see one only when we obscure the other.  Identity politics refutes the idea of illness, while medicine shortchanges identity.  Both are diminished by this narrowness.”

As midwives, we believe that the journey matters.  How you bring a baby into the world is an important piece of our identity as women, as well as how he/she was conceived.  The American College of Nurse Midwives makes buttons that say “Listen to Women”.  This is why I became a midwife:  to give voice to women.  Those who experience infertility are a comparatively small group of women, and women who become pregnant after, an even more modest pack.   To give us voice has been my calling since taking the journey myself.  Maybe it’s, like I said, finding a purpose makes my struggle worthwhile.  Maybe it’s penance for all the women I cared for before understanding what it was like to be on the other side.  But here I am in my small corner of the world, trying to educate my colleagues, and be a source of support to women who seek it.  I presented at a professional conference in 2011, and will again at our American College of Nurse Midwives in May.  And I started my blog, because I wanted join the chorus of bloggers as someone who could offer support both as a midwife and a friend.  Not exactly a shout from the mountain top, but as one of many voices who want our loved ones to know the following:   that infertility deeply affects our lives, even when treatment is “successful”; that pregnancy and parenting is not easier for us, just because we tried harder for it and we still need our friends and family; that it’s difficult to emerge from the isolation of infertility and ask for support, so we hope you’ll be there for us.  Mostly that, even when our bellies are showing, and sometimes, even when we’re pushing a stroller around, we still feel “infertile”.  It’s not good or bad, not an illness or deformity, but it is the prism through which we now view life, part of the fabric of the women we are.  Thanks to organizations like Resolve, we are finding our voice.  Please visit their website and lend your support to this organization in any way you can.  http://www.resolve.org/infertility-overview/what-is-infertility/

A Brief Distraction

There will be no midwife’s advice this post.  Pail Bloggers asked for bloggers to submit answers to the following 20 questions, and I couldn’t resist.  So if you will allow me to be self-indulgent, there will be more useful information next post.

1.  What is the last thing you threw in the garbage?  The bad ends of the vegetables I just cooked for dinner.

2.  What is the #1 most played song on your Ipod?  I don’t have one, but I have a broadway playlist that I shuffle constantly.

3.  What is your favorite quote?  From the Dalai Lama, “Religion and logic should never contradict.”

4.  What chore do you absolutely hate doing?  Washing dishes – because no matter how much time I spend, they never seem to be done.  Ever.

5.  What is your favorite form of exercise?  I love Zumba – I now do it on my Wii and pretend I’m on Dancing With the Stars.

6.  What is your favorite time of the day?  This doesn’t happen every day, but waking up at 5am on an overnight call shift and realizing I’ve been asleep most of the night.

7.  What is on your bedside table?  Alarm, lotion, and an eye mask for napping during the day after a busy night call (see #6).

8.  What is your favorite body part?  My kids’ little round bottoms!

9.  Would you use the power of invisibility for good or evil?  I would use any power for good.  Evil is only fun for a few minutes, good attracts good people, which stays fun.

10.  If you could choose to stay a certain age forever, what age would it be?  Always my current age, because I seem to learn something every year.  (Although I would choose my 21 year old body).

11.  What is the first thing you would do if you won the lottery?  Start planning my next trip.

12.  What is your biggest pet peeve?  Abnormal hair configurations on men’s faces, (ie  the soul patch).  I have a fantasy of Apolo Anton Ohno where we make love all night, then I shave that stupid thing off him in his sleep.

13.  If you could know the answer to any question, what would it be?  I doesn’t matter, because as soon as I find the answer to something, it just opens up 10 more questions.

14.  At what age did you become an adult?  39, the year I became a mom.  I played grown-up alot before then.

15.  Recommend a book, movie, or television show in three sentences or less.  Call the Midwife:  it gives voice to women of a little known profession, who give voice to women who have none.

16.  What did you do growing up that got you into trouble?  Always mouthing off!

17.  What is the first album you bought with your own money?  Queen, “Play the Game” (on vinyl!).  It’s still one of my favorites.

18.  If someone wrote a book about you, what would be the title?  “I’m not Loud, I’m Italian”.

19.  What story do you wish your family would stop telling about you?  My mother tells everyone she’s ever met about me having a big mouth when I was a kid. (See #16)

20:  True of false:  The unicorn is the greatest mythical creature.  State your case.  False.  Am I missing something, or is it just a horse with a horn?

Originally published March, 2013

A Letter to my Sisters

If you are a pregnant woman reading my blog, I hope you will allow me this diversion for one post.  I just returned from the American College of Nurse Midwives annual convention in Nashville, TN, the first time I’d been to one of our conventions in about 10 years.  I feel invigorated and proud to be included in this legion.  I loved sharing with you and learning from all of you.  

I especially want to thank all of you who came to view my poster, “Pregnancy after Infertility”.  It means so much to me to share something with all of you that I feel so passionate about.  I hope some of you I connected with are now visiting my blog, and I have a few more thoughts I’d like to share.  First, at one of the publishers’ booths, I had the opportunity to flip through Varney’s 4th edition.  I noticed that infertility is mentioned briefly under advanced maternal age, PCOS, and a few other entities, but there is no discreet section dedicated to infertility.  Infertility affects 10% of all women, and 1% of the babies we assist in birthing are a result of ART.  I know there may be contributors to Varney reading, and I hope you will take this statement how it is intended, which is not in the spirit of criticism or disrespect, but as a vision for moving forward.  

I’d like to acknowledge another poster presentation I viewed:  “Conception and Pregnancy experiences of Male and Gender Variant Gestational Parents” by Simon Ellis, Danuta Wojnar, and Maria Pettinato.  What does this presentation have to do with infertility?  Perhaps nothing, except for this challenge I put forth to all of us:  Let us as midwives be on the forefront of talking about all issues which affect all our clients, not just the topics that are the most popular or the most visible.  


Now, as I adjust to the sound of my son playing Mancala instead of music from a country music band, I have a one more reflection from my time in Nashville.

 

TOP 5 REASONS I LOVE BEING A MIDWIFE.

 

5.  Sitting in a lecture between an 80 year old retiree, and a nursing 2 month old.

 

4.  While professionals from other trade shows may come home with pens and hats, my SWAG consist of a toy sperm and personal lubricant. 

 

3.  That no matter how I dress, groom, or wear make up, there will be someone else who looks just the same, and those who don’t accept me exactly the way I am. 

 

2.  Our mid-husbands:  all the strong and compassionate men who are our husbands, lovers, friends, fellow midwives, and kindred spirits, like Dr. David Grimes.  If you missed his lecture, please try to find the recording from ACNM.

 

1.  Being keeper of the knowledge that, while pizza and fed-ex packages may be delivered, babies are birthed, and the power that knowledge contains. 

 

Until Denver, ladies….Can I get a Yee Hah!!!

 

What would Nashville be without boot shopping!

A few stomping grounds.

My poster session – the most difficult part was lining up the papers!

Me, on day 2.

 

And the other #1 reason I love being a midwife – I mean come on, are we fabulous or what!!!

Originally published June, 2013

Passing the Test

I thought I’d cover a topic today that doesn’t specifically have to do with pregnancy after infertility, but when I scan the boards I often see it as a source of angst, which is genetic screening. I find most of the explanations out there lacking, so let me give you mine.
Most women are offered screening for what’s called aneuploidy, or specific diseases caused by an abnormal number of chromosomes. The most common of these is Down’s Syndrome, or Trisomy 21. The tests also screen for trisomies 18 and 13, which are less common but usually life threatening. A screening test won’t tell you if the baby has a certain condition or not, it just calculates a statistical risk based on your age and a number of other factors. If you learn nothing else, this is what I want most women to understand, which hardly anyone tells you: what is called high risk or not is somewhat arbitrary. The first of these tests to come along was a blood test done in the second trimester called an AFP or alfa-fetal protein test. Other hormones have been added to this test, which has evolved into what’s called a quad screen. When the test first came out, there was a cut off number of what they would call high risk, and it was based on the risk of having an amniocentesis, which at the time was thought to be about a 1 in 200 chance of miscarriage. More recent tests have been given a number based on what the cut off should be to be able to diagnose the maximum number of babies without adding too many extra tests to normal pregnancies. I agree with something I heard a maternal fetal medicine doctor say once: that there probably shouldn’t be a cut off or a label of what’s normal or not, women should be given their risk and decide based on their own comfort level. For example, a risk of 1 in 150 would be considered abnormal on a quad screen, but less than 1% chance of having a baby with Down’s syndrome may be perfectly acceptable to some couples. A risk of 1 in 250 would be considered normal, but may seem high to a mother with 5 kid,s 2 of whom have special needs.
So after the AFP or quad screen came the early risk assessment, which is a combination of an ultrasound between 11.5 and 13.5 weeks gestation and a blood test. The ultrasound measures the baby’s nuchal translucency, or the thickness of the neck, and his nasal bone, both of which have a statistical relationship with chromosomal abnormalities. The advantage of this test is it is a little more accurate than the quad screen, and you get your results earlier. Then, in the past few years, we started offering patients something called the serial sequential screen, or integrated screen, which is a fancy word meaning a combination of the two older tests. The benefit if this test is it is the most accurate way of screening; however, not all insurances are covering this test, at least in my area.
So, if you have a screening test that shows a higher risk of Down’s syndrome, what are your options? The first option not many people talk about is to do nothing. If your screen result comes back with a risk of 1 in 50, you may be OK with a risk of 2%. If you would like a diagnosis, the gold standard is to do an invasive test. The most common is an amniocentesis, which is when fluid is removed from around the baby and tested for DNA. The results are as close to 100% accurate as you can get. Most women have heard that there is a risk of miscarriage from this exam. For years, we told women the risk was 1/200, now we are quoting 1/300 to 1/500, although there is speculation that it is even lower. The change is two-fold: first, ultrasounds have gotten much better, which makes it easier to insert the needle safely. The second reason is when the risk of amnio was first quoted, no one ever compared it to women without amnio who had miscarriages, and often it is women who are higher risk who are getting the test to begin with. The other invasive test is called a Chorionic Villi Sampling (CVS). It involves removing a small amount of tissue from the placenta. The advantage is it can be done earlier in pregnancy, between 10 and 12 weeks. However, there is a slightly higher risk of miscarriage compared to an amniocentesis, about 1 in 150.
There is a new test called cell free DNA. There are many companies offering this test, you would have to inquire with your provider as to which test they offer. The basics of the test is that there is a small amount of fetal DNA in the maternal blood, so DNA testing can be done by drawing the mother’s blood. The advantage is it is non-invasive, and carries no real risk, like the amniocentesis or CVS. However, although it is 99% accurate, it is not as close to 100% like the more invasive tests. Also, most insurances don’t cover it. The price can be anywhere from $200 to over $1000. My advice is that if you are interested in having this test, call the company directly and try to negotiate a lower price.
So, why might you want to have a screening test? The basic question you need to ask yourself is, is this information you would want to know before the baby comes? I think there is a perception that the only reason someone would want to be screened is if they would terminate the pregnancy. I have found that not to be the case. Many women feel better having the diagnosis prior to their baby’s birth, having had time to educate themselves and prepare. That being said, if you have an elevated risk on a screening test and choose not to have a more definitive test, would you feel better knowing there is a greater possibility and preparing yourself, or would that information just cause more stress? I actually viewed prenatal screening in the opposite way. I was 39 and 41 when I had my children and I already knew I was higher risk. I had the screening tests and thought, if it shows I’m low risk, I can be a little more reassured. If it shows I’m higher risk, I’m really no worse off than before. (I will talk specifically about older moms in another post – I think it’s a topic which deserves it’s own chapter.)
For some, especially those who have had a friend of family member with Down’s syndrome or similar disorder, a decision about how you would handle the diagnosis may have come long before you were pregnant. For some, however, the first time you may be considering this is when the test is offered. How to be screened and what to do with the information is a very personal decision. The only thing I might add, is that there may be assumptions from providers, family, or even yourself that your decision should somehow be different because you conceived after a struggle with infertility. Your journey up to this point will certainly color all future decisions, but it is one of many factors in how you determine the right course for you and your family from here on in.
I welcome any questions in the comment section, and have listed websites below for further information.

Resources:
http://www.acog.org/~/media/For%20Patients/faq165.pdf?dmc=1&ts=20130707T1632232672
http://www.marchofdimes.com/news/the-leading-edge-of-medical-innovation-new-prenatal-genetic-tests-use-moms-blood-to-learn-about-her-baby.aspx

Originally published July, 2013

Moving On: Choosing a Prenatal Care Provider

You should choose a midwife.  Really, what did you think I was going to say?  Seriously, I obviously believe very strongly in what I do, but there are several options for prenatal care, providers, and birth sites, and you will choose what is right for you.  There are several good articles on choosing a provider, so I’ll refer you to those for the basics.  I’d like to add a few other notes from someone on the inside.

The first thing you should do is discuss with your partner, and think about yourself, what would you like from your prenatal care and birth experience?  Actually thinking about this may be something you have avoided for quite some time. When you stop and think, you may realize that what you imagined when first planning a pregnancy is not what you want one or more years later.  Some women are so anxious after trying so hard to conceive, that doing something feels better than doing nothing and they want every test and bit of technology to feel secure.  Some women have the opposite reaction:  after so many procedures and medications, you may be up for a more natural approach than you saw for yourself originally.

Allow me to let you in on medicine’s dirty little secret:  it’s not as easy as it looks on TV.  There are general guidelines for care, but within those guidelines there are still options.  Midwives as a general rule favor less intervention and focus more on educating women to take care of themselves, easing anxiety, and encouraging women to listen to their bodies. That being said, I’ve worked with physicians who are less conservative than I am with intervention.  I’ve had many midwifery colleagues with a wide range of experience and comfort levels.  Before you choose a provider ask yourself:  Are you more comfortable doing something rather than nothing?  Would you prefer your provider make decisions about care, or would you rather be educated and make the decisions yourself?  Most providers know themselves where they fall on the spectrum of caution and should tell you if you ask.

The following link contains other questions to consider asking your provider.  http://www.parentingweekly.com/pregnancy/delivery-options/choosing-an-ob-or-midwife.htm  The few women who ask me some of these questions always ask if I mind being questioned.  I can speak for most of my colleagues when I say, no!  I’m always surprised when women ask less questions of me than I did when interviewing wedding photographers!  One of the questions listed for midwives is to ask what obstetrician will back them up.  I think another question you should ask is, “How are complications managed?”  In other words, if you develop a complication during pregnancy, will you need to transfer care completely to the MD or will the midwife still care for you in co-management with the obstetrician?

I’d like to say a word about choosing a large or small group practice.  Possibly not knowing the doctor or midwife who will be with you in labor is a cause of angst for many women.  For better or worse, the days of a solo obstetrician who is on call 24/7 are gone.  There are some home birth midwives who deliver all their own patients, so if you would like highly personal care and natural child birth, this may be a good option for you.  Many groups have 3 or 4 obstetricians and/or midwives, and patients see all of them throughout the pregnancy.  Just remember, the larger the practice, the less time you have developing a relationship with any particular provider.  The other thing I like to share with women who see me is something a former colleague of mine said: “Everyone gets the midwife they need.”  I know when I take care of women whom I’ve never met, we are old friends after about an hour!  It’s a very intimate time, and you usually develop a relationship very quickly.  I knew most of the midwives in the practice I went to because I worked with them.  In labor, I got the one midwife I’d never met.  It turned out, she also had been through IVF and was able to provide exactly the support I needed.

Most women will have traditional prenatal care, where you schedule appointments every few weeks and have about a 10-15 minute visit.  There is a new trend in medicine called shared medical appointments.  One particular type of shared prenatal care is called Centering Pregnancy.  http://centeringhealthcare.org/pages/centering-model/pregnancy-overview.php  In general, I highly recommend this style of prenatal care, because women get much more time for questions and information during the appointments, and the support from the other women in the group is invaluable.  There are several studies that show that women who have been through group prenatal care have lower anxiety levels, and lower incidence of some pregnancy complications.  However, if you’re still feeling like you don’t fit in with other pregnant women, group prenatal care may not be for you.

Transferring to obstetric care may be difficult.  You’ve spent lots of time getting to know your RE and developing a relationship with a new provider at a time when you may already be feeling anxious and uncertain may be difficult.  In addition to the questions listed in the above article, you may want to ask your doctor or midwife if they have much experience with IVF pregnancies, and if there is an opportunity to schedule longer appointment times if you think you need them.

For further resources: