Tag Archives: advocacy

Sharing the Journey with Ivy Shih Leung

Ivy’s joined the blogging ranks of PPD Survivors recently and I decided to scoop her up for an interview here. She’s been writing some really great stuff over at Ivy’s PPD Blog and is working on a book based on her experience. Check out her blog and enjoy a little slice of her story here!

Tell us about yourself – who is Ivy when she’s not busy being a mom or working?

Hmmmmm……since 3/4 of my life these days revolves around being a mom and working, I have to think a bit on this one. For the past 4 years, I’ve been trying to write a book about my PPD experience. For the past 1-1/2 months I’ve been blogging about my PPD experience, realizing that blogging is an effective means of helping women who are currently suffering from PPD and getting the word out to as many people as possible about PPD in hopes that one day PPD will no longer be so misunderstood, under-diagnosed and under-treated. My motto is: Knowledge is power; information is enabling, and it needs to be shared! Obviously, PPD has shaped my life tremendously. I would like to do more in terms of advocacy and PPD support through telephone support and PPD support groups, as well, but I need to get my book done first.

In terms of what I try to do for fun, I’m a big TV watcher. Nowadays, that’s the cheapest & easiest form of entertainment. I record my favorite TV shows to watch at a convenient time (i.e., after my daughter goes to sleep), like American Idol, Lie to Me, Brothers & Sisters, CSI Miami, Fringe, and Heroes. I try to catch lunch and dinner with friends in NYC a few times a month. I love movies and Broadway musicals, and try to see them as much as I can. I love beaches, shelling, kayaking, and snorkeling in tropical waters. And I love going to craft shows to admire the creativity and talent of artists. I also love to travel, and try to go somewhere different for vacation each year (by plane) and the more exotic the location, the more pictures I take. Last year, my husband and I made it to Athens and Santorini, Greece. I was in photo-op heaven!

You’ve recently joined your voice to increase awareness of PPD. What made you decide to go public with your story?

It was anger of people’s ignorance – those who were my doctors, those whom I’ve talked to and those in the media who say stupid things – that propelled me to write this book. I never would have thought of writing a book had it not been for Tom Cruise’s ignorant ranting that aired on the June 24, 2005 Today Show that “there is no such thing as a chemical imbalance.” I suddenly felt the urge to write a book about my battle with postpartum depression. Rather than just get mad at Tom Cruise’s remarks and sit there and do nothing about it, I decided there weren’t enough people out there telling their personal stories. I would channel all the energy stemming from my anger and do something positive and try to help others. I would tell my story in the hopes of helping and educating as many people as possible about this silent and potentially deadly condition.

I want to reach out to moms currently suffering from PPD. With access to personal stories of PPD survivors, the less alone and ashamed mothers suffering from PPD will feel and the more empowered they will be to seek the help they must get. One of the two things I regret about having PPD is the lost opportunity to bond with my daughter to the fullest extent possible in those months where I was transformed into a different person. The other regret is not having found an understanding individual to help me through the darkest days by assuring me that I wasn’t going crazy, I wasn’t alone and I will get better. Because of this, I want to share my story to give hope to those suffering from PPD and help them feel less alone knowing that there are others who have survived PPD.

I want to reach out and validate the experience of moms who have already suffered from PPD, and encourage them to speak up. The more PPD survivors speak up, the more others will know what PPD is and that it’s a real illness that should be taken seriously. You would think that, of all people, fellow women would be able to empathize with you. But that’s not the case at all. The woman who has never had a child before or who had a perfect pregnancy, delivery and baby tend to be as clueless as men about PPD. Those who have neither experienced PPD firsthand or even secondhand, by way of someone they know and therefore witnessing its devastating effects, cannot understand and empathize with those suffering from PPD. Out of ignorance usually comes pre-conceived notions, or myths, that can’t be farther from the truth. We dispel those myths once and for all.

Finally, I want to reach out to all parents-to-be so they can be knowledgeable about PPD, so that if a new mom succumbs to it, they won’t be totally caught off-guard. When they seek treatment from a doctor, they won’t be at a total disadvantage if the doctor doesn’t spend time to 1) explain to them what is going on so, 2) answer questions she will undoubtedly have, and 3) give reassurance that she is not alone in what she is experiencing and she will be fine, though it takes time for the treatment to be effective.

What was childbirth like for you? Was it what you expected or did things get unexpected and frantic?

I had no expectations of childbirth. I was a bit nervous from not knowing what to expect. All I knew was from what you see on TV and in the movies (i.e., women screaming from pain). Labor and delivery actually went pretty smoothly, which was a tremendous relief. It quickly went downhill from there, though, with the discovery that my placenta would not come out. It turned out to be a rare incident of what they refer to as placenta accreta. Three days after delivery, my doctor had to remove my uterus because the placenta had grown into my uterus. If this weren’t done, I would’ve died. I am absolutely sure that it’s not the traumatic delivery experience itself that caused PPD to rear its head. The following series of events led to my insomnia, the first sign of PPD for me:

  1. negative experience in the hospital-e.g., constant sleep interruptions in the hospital, constant moving from one room to another and changes in hospital staff, multiple attempts to replace IVs in my arms/hands, food deprivation (I only had about 2 meals the whole week I was there….otherwise what I had were ice cubes for the most part, plus an occasional broth or jello), below-par treatment of certain hospital staff, searing pain (felt like someone was burning me) in my abdomen that came & went for 2 days after the surgery
  2. constant sleep interruptions from the noises the baby made throughout the night, plus night feedings
  3. baby’s bad case of eczema and cradle cap
  4. baby’s one week colic

For some Moms, the glow after childbirth simply isn’t there. Instead it gets dark, creepy, and eerie. What was your postpartum journey like?

My childbirth experience was not a glowing, happy experience–at least not until I came out of my PPD fog. And it’s unfortunate that I won’t ever get another crack at this, now that I’m missing a uterus. My experience wasn’t exactly dark, creepy or eerie, either. The 7 days immediately following childbirth were spent in the hospital. It was a negative experience that I try never to think about. You can read more about my hospital experience and my descent into PPD, with insomnia followed by panic attacks at my blog: http://ivysppdblog.wordpress.com. My ignorance about PPD (and my doctors’ ignorance) aggravated my situation. Had I known what PPD was, how to identify risk factors for it, realized that insomnia and panic attacks are symptoms of PPD, and proactively tried to keep risk factors to a minimum (e.g., make sure I got round-the-clock help with the baby and housework), I would not have suffered as badly as I did. Hell, I may not have even suffered from PPD!

What did you find the most helpful in climbing out of the gaping hole of your Postpartum Mood Disorder? What did you learn in the process about yourself?

Firstly, my husband’s love and support (see my response to the next question). Second, Paxil, without which I would not have been able to recover in 4 weeks and get on with enjoying my motherhood experience with my baby. My brain biochemistry was so messed up (due to hormonal changes, delivery complications resulting in a major surgery 3 days after delivery, traumatic one-week hospital stay, constant sleep interruptions throughout the night for a month starting from the time I was in the hospital, sleep deprivation and anxiety), that it’s highly unlikely any other treatment would have cured me as quickly. If I had requested my doctors to test for cortisol levels because my body was undergoing so much stress (“fight or flight” response on overdrive), I’m sure they would have been off the charts (which is probably why I had daily hive breakouts on my arms, legs, butt and mouth…some of them were 2″ long welts).

I learned a couple things about myself as a result of my PPD experience. Firstly, I’ve never been depressed before (I’ve always wondered whether I had been previously). Second, I emerged on the other side of the dark tunnel a survivor and a much stronger and smarter person than before. I realize that my calling is now to help educate others about PPD. I would like to help prevent other mothers from going through what I went through. I wouldn’t have realized this calling had I not suffered the way I did.

How did your husband handle your PPD experience? Did it affect your marriage?

He handled my PPD experience like the trooper that he is. He was there for me EVERY step of the way. I never even had to ask him for help. Though he didn’t really know how to comfort me on those really, really dark days where I just wanted to wither up and vanish into thin air, he did all he could to listen to me, give me hugs, come home from work early whenever a panic attack was setting in, and help with the baby, housework and cleaning–on top of having a full-time job. It wasn’t just a heck of an awful experience for me, it was really tough on my husband as well. He became physically and emotionally drained and didn’t have many people he could turn to for advice. This experience showed me how lucky I am to have him for a husband and how lucky my daughter is to have him for her daddy, and how strong our relationship is to have survived what we both went through.

At your blog, you make reference to a book you’re in the process of wrapping up. Where are you in this process and has it been helpful to write it all down?

If during my high school and college years and even up until before I had the baby, someone had told me I’d be writing a book one day, I would’ve laughed at them. I’ve never even kept a diary. It definitely takes life-altering experiences to motivate you to do something that you think might make a difference in someone else’s life. My husband thought writing a book was an excellent idea, and would certainly be a great outlet for my feelings. I’ve been working on my book for the past four years and plan to finish in the next few months. Writing the book has been such a therapeutic experience.

Name three things that made you laugh today.

Though there were definitely more than three things that made me laugh today, the primary ones that come to mind: 1) my daughter makes me laugh in delight and amazement each and every day in terms of some of the words/phrases she uses; 2) my daughter (again – but why would that surprise you) and the way she loves to dance; and 3) I have to admit that I watched the movie “The Shaggy Dog” (starring Tim Allen) with my daughter and I cracked up throughout the movie. Great comic relief after a long day at work!

What do you find the most challenging about parenting? The Least?

I’m not sure if other parents would agree, but just having to think of ways to stimulate her intellectually, socially and athletically is challenging for me. After all, as a parent, I am responsible for her future and I only get one shot at it. The least challenging is loving her…it comes naturally.

Last but not least, let’s say you have just one chance to provide some advice to an expectant mother (new or experienced) about Postpartum Mood Disorders. What would you tell her?

PPD is the #1 complication of childbirth, with 1 out of 8 mothers experiencing it. You wouldn’t know it, though, because most mothers keep their experiences to themselves. Knowledge about PPD & adequate social support to enable mom to get the rest she needs postpartum are CRITICAL! The more knowledgeable and prepared a mom is for situations that can reduce risk factors for PPD-getting adequate social support is just one example-the better off she will be. No woman is completely immune from PPD after having a baby. With the right combination of risk factors and stressors, any woman-even you-could end up suffering from it.

Health care practitioners discourage disclosure of Postnatal Depression

Picture by Flickr

Picture by Flickr

In a study published yesterday, UK researchers reviewed the disclosure of Postnatal Depression from three different vantage points – the mother, the GP, and home health visitors.

The results are chilling.

The mothers reported making a conscious decision regarding their decision to disclose symptoms of Postpartum Depression which is not terribly shocking because I went through the same thing. It is most definitely a conscious decision and a difficult one at that.

The chilling result lies within the response of the Health Practioners  “described strategies used to hinder disclosure and described a reluctance to make a diagnosis of postnatal depression, as they had few personal resources to manage women with postnatal depression themselves, and no services to which to refer women for further treatment.”

I feel as if I’ve been punched in the gut. I want to cry, scream, yell, stomp my feet. But I know that won’t change what’s going on over there and even over here because I’m sure this attitude is very pervasive in the medical community here in America as well.

Where’s the responsibility of the medical professional who turns a blind eye to the struggling new mother and actually uses strategies to prevent her from admitting she’s having a hard time? How does that serve anyone but the selfish nature of that physician? What happened to the Hippocratic Oath and “Do no Harm?”

If we pretend a problem doesn’t exist, it doesn’t go away. What if we pretended cancer was all in our heads and didn’t offer chemo, radiation, or other therapies? Would it go away or would it sit and fester, eventually killing us and hurting those around us? I think we all know that answer. It is no different with Postpartum Mood Disorders. Left untreated a new mother may even slip into Psychosis as she tries to rationalize intrusive thoughts or fall even deeper into depression and attempt to take her own life or even worse, that of her infant’s.

With all the online resources, training, and knowledge at the fingertips of even lay-people such as myself, there is no excuse for medical professionals to ignore this condition anymore. Any medical professional in my opinion who would implement strategies to hinder disclosure of symptoms should be stripped of the right to practice medicine. It’s wrong and it should NOT be acceptable. Mothers deserve to be treated honestly and with respect. They need to be given a safe place in which they are able to admit any emotional trauma or difficulty they are having. Giving them this space will foster the growth of trust and compassion rather than continue to grow the cold shoulder on which they have apparently been leaning upon.

So what can we do about this? Write about it like Katherine Stone, myself, Cheryl Jazzar, and others. SPEAK like Natalie Dombrowski, become active in online peer support like Tonya Rosenberg, talk to another mom and let her lean on you. Let her know you too have been there. Talk with doctors or their nursing staff about your experience and how important their role in discover and recovery can be. Write your Senator in support of The MOTHER’S Act as this wil laid in the growth of knowledge and support among the medical professional as well as research regarding how to bring the new mother and medical professional together. Sharing your story is the best thing a survivor can do. Our voices woven together can be the strongest advocate for increased treatment and acceptance. Won’t you lend us yours?

Sharing the Journey with Bob Gibbs

Bob Gibbs is the father of Jennifer Bankston, the woman for whom the foundation Jenny’s Light has been founded. Jennifer tragically took both her life and her infant’s life as a result of PPD. Her family was unaware of this horrible disease and did not see the warning signs. Bob, his wife Sandy, Jenny’s sister Becky, and numerous family and friends have put their heart and soul into Jenny’s Light to ensure others do not suffer in silence the same tragedy they have experienced. I applaud their efforts and numerous achievements to date. As more families and women speak up about our experience with PPD, the louder our voice becomes – forcing change around us, eroding the stigma, and empowering new mothers faced with these same challenges – giving them the courage to step up and get the help they DESERVE.

What factors surrounding Jenny’s experience led to the development of Jenny’s Light?

I think the main thing was that it seemed so senseless and we wanted to have some good come from it. We wanted to create a lasting legacy for Jenny and Graham.

For me, the more I work with women and their families, helping to educate and aid them in recovery, the stronger I become. Have you found this to be true with your work through Jenny’s Light?

Definitely! Sandy and I feel like this is our therapy. It is so gratifying to know other people appreciate what we’re doing.

What are some of the things Jenny’s Light has already achieved in such a short time?

We have distributed over 20,000 PPD info cards, mostly at Triathlons, had over 25,000 hits on our website representing 73 countries, received hundreds of testimonials from mom’s who saw our site and were moved to seek help, raised over $140,000 in just 9 months, and have formed a partnership with Allina Health Systems and Abbott hospital to develop a universal screening program within their system.

I am absolutely amazed at the level of fundraising already in place for Jenny’s Light. Has the outpouring of support for your organization surprised you as well?

At first we were overwhelmed, but the more responses we saw on our website, the more we realized that this was a problem that needed attention and the people that had been touched by it wanted to help.

What are some signs and symptoms parents and family members should watch for after a woman gives birth that may be indicative of an underlying emotional disorder?

There are many! Frequent crying or tearfulness, loss of interest or pleasure in life, difficulty sleeping or sleeping too much, feeling worthless, hopeless or guilty, showing little interest in your baby, to mention a few.

As is often mentioned to new mothers, taking time for oneself is important. What do you do to recharge yourself after a long day?

Sandy and I are both bike riders and outdoor nuts. We have a cabin in northern Wisconsin that is definitely our recharge zone.

In your opinion, what should all expectant mothers know about PPD before they give birth?

They should know the symptoms, be aware of the dangers, have a strong support system in place, and know they are not bad mothers if they don’t feel on top of the world.

What should health care providers do to improve their treatment and prevention of PPD?

This is the area where the most work is needed. No specialty really wants to take on more work in dealing with this problem. We are attacking it from the Mental Health angle. There needs to be screening, follow-up, and care provided to these mother if don’t want to see repeats of what happened to Jenny and Graham.

During this time in your life, what has given you strength to go on after losing Jenny and Graham?

Jenny was a very special person. She was loved by so many people, Sandy and I have a hard time comprehending it sometimes. We feel that continuing her legacy of caring is important for us and all the people that she touched.

Last but not least, do you have any advice for other parents who have a new or expectant mother in their lives?

Parents, spouses, friends, all need to know about the signs of PPD’s . One of the most sinister things about PPD is that mothers are often hesitant to ask for help, fearing they will be looked upon as unfit mothers.

Sharpen those keyboards and use those phones!

Ladies! (And gentlemen!)

Get those advocate attitudes revving!

The MOTHER’S Act is set to see action THIS WEEK in the Senate.

So pick up your phone, email your Senator. Let them know that supporting the MOTHER’S Act is a brave first step towards battling this illness that affects thousands of American Families each year. Give these families a voice!

Here’s a clip from what Susan Dowd Stone, immediate past President of PSI has to say:

Today, America’s mothers, infants and families have reason to be encouraged and to reach out to their state senators to again request their support of The Melanie Blocker Stokes MOTHERS Act in its final push to passage.YOU HAVE BEEN HEARD and this morning, Majority Leader Reid introduced a package of bills called Advance America’s Priorities Act which now includes The Melanie Blocker Stokes MOTHERS Act. Senators Robert Menendez (NJ) and Richard Durbin (IL) have been working very hard with Majority Leader Harry Reid and Chairman Edward Kennedy to pass this legislation.
These initiatives will be considered over the next week.

Your renewed advocacy and attention is especially welcome RIGHT NOW! We need to continue make it deafeningly clear how important this bill is to women and families all across America.  The online petition in support of The Melanie Blocker Stokes MOTHERS Act has been reintroduced and we invite your signature and call to your state senators office. If you wish to write a personal letter, this would also offer welcome support. By clicking on this link you will be connected to the petition and information on how you can reach your senator and sign the petition.  http://capwiz.com/ndmda/issues/alert/?alertid=11668371

We are almost there!! After years of unfathomable and needless suffering, American women may finally get the relief offered through increased research into the causes of perinatal mood disorders, better education of healthcare professionals to identify and treat these disorders, and grants for programs and services to help women to recovery. Thanks for the tremendous efforts which have brought us to this point and your steadfast participation in this final effort.

MOTHER’S Act Rumors – Breaking the Silence

I consider this post to possibly be one of the most emotionally charged and important posts that I have written to date. Katherine Stone recently addressed this issue and having received a comment here at Unexpected Blessing, I am following suit.

On February 11, 2008, I received notification of a comment in response to one of my MOTHER’S Act posts. This comment blatantly challenged and negated the necessity for the bill and raised an alarmist point of view by claiming that new mothers would become trapped by the system and forced to take anti-depressants, masking the “root” of the problem. This comment also claimed that there is no “valid or concrete evidence proving the existence of such a disorder…” going on to point out that the disorders in the DSM-IV are “voted on….” (see: http://www.acnp.org/g4/GN401000082/CH081.html)

Infuriated with this comment and feeling first hand the ignorance of the individual that wrote this, I remained silent until I could calmly and rationally respond.

First, let me assure you, I have LIVED the valid and concrete evidence that proves the existence of this very disorder. It has disrupted my life, it has disrupted my family’s life, and it has changed me as a person. Through this challenge, I have found my way out of the rabbit hole and I have found many others who have also found their way out or are currently working their way out.

I have also suffered without treatment – because my first doctor decided that I didn’t fit the criteria for PPD – and was refused treatment based on this and the fact that I refused to stop nursing – something I was asked to do WHILE MY INFANT WAS SCREAMING TO BE NURSED! I knew from research and contact with others that I could be treated with medication. I also know now that I needed medication – because I tried to recover on my own but was unable to so, resulting in Progressive Postpartum Depression that continued into my second pregnancy, leading to early delivery and ultimately to my hospitalization when I was unable to do anything but curl up in the fetal position and rock back and forth, staring out my window, praying that I wouldn’t do anything to my children.

I believe in this bill because I have lived through the very depths of the condition it is fighting to uncover and remove the stigma of so that the next mother who suffers will not have to suffer in silence, will not have to go to her doctor and be rejected and told to “suck it up” and that this is a normal part of motherhood, something that she should get over, something that shouldn’t be happening because she is more than 6wks postpartum and therefore all her hormones should be back to normal by now. Clearly if a woman is seeking treatment (which by the way, is the HARDEST step), she has a reason to do so. And anti-depressants are not always the answer – there are plenty of other therapies that can be explored and may work for certain individuals.

The point is that mothers should feel as if they can work with their physicians as part of a team and not be disregarded nor dismissed when they finally push the tears and anxiety far enough away to make that plea for help. And let’s not forget that these are innocent victims – the mothers, the infants, the fathers, the families that are plagued by this tragic disease every day. It turned our world completely upside down and does even more to other families. I know I was lucky – I got help, I encountered physicians who were open to my plight and willing to lend a hand to help me climb out of my dystopia, encouraging me to turn and fight, making me believe that I could beat this. And I did beat it. I refuse to let anyone fight this alone as a result. If my story saves just one life, it will all have been worth it. I will fight for women and families to have access to fair and non-judgemental care until the day I die.

Ultimately I am pleading the case FOR the MOTHER’S Act. But I will tell you what I tell any woman in the midst of a postpartum crisis I come in contact with. Educate yourself. Get the facts, get them straight, verify them, and then speak. This is a free country and everyone is entitled to their own opinion, but everyone should also be entitled to fair and just healthcare and not be afraid to make that phone call for fear of being dismissed or shrugged off. Postpartum Depression IS real. I have been there. I know a LOT of other women who have been there – it has been with us for thousands of years and yet we still live with the stigma. It is only with openness and research that acceptance and fair treatment will come. Please don’t deny new mothers the access to proper care that they deserve and so desperately need. So many times I have heard of doctors passing on bad advice or being dismissive, even in my hometown I have heard stories of women being told “Well if you’re not suicidal or thinking about hurting your baby, you’re fine” Excuse me??? So you want me to call you back AFTER I’ve done something. NO!!!! Preventive care is the best care – any cardiologist or oncologist would tell you that if this were heart disease or cancer we were discussing. But it’s not. It’s a mental illness. A DISEASE of the mind that these new moms did NOT ask for and want to be free from so they can enjoy their new babies and roles as mothers. Trust me, if we could free ourselves from these bonds on our own, we would.

So go forth, educate yourselves, read the text of the MOTHER’S Act, contact your Senator, ask questions, contact Senator Menendez. Contact PSI (who, by the way is NOT funded in any way shape or form by the pharmaceutical industry!), contact your local mental health advocacy group. But please, before you buy into what these naysayers have to cry from their mountaintops, check out the facts for yourself.