Visit my Shop Hoping Believing Waiting

Visit my Shop Hoping Believing Waiting
Baby Dust, Wristbands, Necklaces and more! (Proceeds go to help fund our journey)

Tuesday, February 19, 2013

PCOS

Wanted to share this important information about PCOS and how it can not only cause infertility issues but lifelong health problems.


PCOS: How Does PCOS Affect Women?

In the first entry, we discussed its definition and symptoms, and why PCOS is somewhat controversial in fat-acceptance circles.

In this post, we're going to describe how PCOS affects women, how if often develops and presents, and how it can affect women down the line as they age.

  In later posts, we will discuss testing and diagnostic issues, its effects on fertility, pregnancy and breastfeeding, and give more details on how it affects menopause and aging.

Readers should know that we'll be doing this mostly from a size-acceptance point of view, rather than the usual "you have to diet" point of view present in most PCOS websites.  Weight loss will be discussed as only one possible treatment ─ with an honest look at the potential benefits and drawbacks of weight loss as treatment ─ but other alternatives will be emphasized.

  What Does PCOS Look Like?

  As one article puts it, "Polycystic ovarian syndrome is a clinically, histologically, and biochemically heterogeneous condition."  Translation: PCOS presents in each woman a little bit differently.
  The Classic Presentation

The classic case is a woman who:
  • is quite heavy
  • has very irregular or totally absent periods
  • has facial hair growth on her upper lip and/or chin (and often elsewhere)
  • has dark patches of skin in various places on her body
  • has skin issues, with cystic acne well into adulthood
  • struggles with infertility issues
  • has trouble getting or staying pregnant
  • probably gained a lot of unexplained weight at some point
  • has struggled with her weight ever since, often yo-yoing up and down chronically
  • has slightly enlarged ovaries with many cysts on them
  • has health issues such as glucose intolerance/diabetes, high cholesterol, and blood pressure concerns
  •  
Women like these are fairly easy to diagnose with PCOS because their symptoms are so clear.  The main markers looked for in PCOS (irregular periods, physical signs of too many androgens, and cystic ovaries) are obviously present.

  Sadly, however, even women with obvious cases of PCOS often go undiagnosed. It's very common for these women to see many doctors for their symptoms before someone realizes what is going on.  Too often, her weight is blamed as the source of her symptoms and all other possibilities are ignored.

 Sometimes, the woman figures out her PCOS status on her own from the internet or a friend, and only then can she get the testing she needs.

Although Stein and Leventhal first "discovered" this condition in 1935, it has taken a long time for doctors to really take it seriously.  It is only in the last 10-20 years or so that awareness of it has really taken off.  Even so, many providers still just want to blame the woman for being fat and not look deeper for other possible mechanisms.  They view fatness as the cause, and refuse to believe fatness could merely be a symptom of a deeper problem instead.

  Variations in Presentation

  Of course, not every case of PCOS follows this classic profile.  If it's hard for women with very obvious symptoms of PCOS to get diagnosed, imagine how hard it is for someone whose case is more subtle!

  For example, not all women with PCOS are fat. Some women with PCOS are average-sized ─ but still have very strong issues with insulin resistance and fertility (like actress Emma Thompson). It is unknown why some women with PCOS have weight issues and others do not. It's probably not due to differences in eating patterns but rather to some unknown metabolic difference.  Whatever the reason, it can be hard for the skinny woman with PCOS to get diagnosed.

  But generally speaking, a lot of women with PCOS have very significant weight issues. The usual statistic quoted is that 50-60% of women with PCOS are "obese" ─ but because many doctors underdiagnose the condition in fat women, it's possible the percentage may actually be higher.

  Hirsutism is extremely common in women with PCOS (some sites estimate it is present in 70-80%), but not every woman experiences it.  Some have only a little body hair and no facial hair, yet because doctors really look for facial hair as a sign of androgen excess, women without this classic sign are sometimes told they don't have PCOS, despite other pertinent symptoms.

  Thinning scalp hair is much less common than hirsutism as a symptom, but is often overlooked as a potential sign of androgen excess.  And because many women find ways to cover this up or are too embarrassed to mention it to their doctors, it is underused as a symptom for diagnosis.

  Fertility is another symptom that can vary.  Many women with PCOS have significant fertility issues, yet not all do. For some, it's closely tied to co-morbidities like hypothyroidism; if they treat that, fertility is less of an issue.

 Sometimes, fertility for PCOS women is okay in younger years but declines over time, so some only develop infertility later on as the condition progresses.
  Although some doctors consider fertility issues central to the diagnosis of

PCOS, some women show clear skin and metabolic symptoms of PCOS yet never have problems conceiving or maintaining a pregnancy. Still, they may benefit greatly from treatment of the metabolic issues of PCOS, so many providers have begun to expand their definition of PCOS beyond  its past focus on infertility.
  Clearly, the heterogeneous nature of PCOS means that there are many gray areas in diagnosis.

How Does PCOS Develop?

PCOS tends to run in families, and can come from either side of the family (mother or father). If lots of women in your family struggle with their weight, have irregular periods, diabetes, hypertension, and other common consequences of PCOS, the chances that you might have PCOS are higher.  Or if the males in your family have lots of premature balding and metabolic syndrome, this may also indicate a familial predisposition towards PCOS.  However, it takes a combination of genetic and environmental factors for PCOS to manifest itself, so not every family member is always affected.  Family history is a clue, not an automatic indication.

  Often PCOS first presents a few years after periods begin (although some with very severe cases may show symptoms like acanthosis nigricans and significant fatness even well before puberty). Typically, menstruation begins normally, but within a few years, periods begin to skip here and there. Eventually, menstrual issues worsen; some develop long cycles (more than 35 days), some develop erratic cycles, some skip whole sets of periods, while the most severe cases stop cycling completely.

  At some point most women with PCOS develop secondary skin-related symptoms like hirsutism, thinning hair, or significant acne (especially boil-like sebaceous cysts under the skin).  These can be quite distressing socially, so this is often when these women begin to seek medical answers, often without success.

It's not unusual for many woman with PCOS to experience a significant, unexplainable weight gain ─ with no change in habits ─ in her late teens or twenties (and sometimes later too); this is often despite similar caloric intakes as women without PCOS.  As one website notes:
Approximately 60% of women with PCOS have weight management issues which can lead to obesity with only normal caloric intake. Energy in the form of glucose (food) is stored right away as fat, instead of being made available for other functions within the body. This can lead to chronic fatigue and undernourishment, despite the fact that there is adequate food intake and even an appearance of overnourishment.  Those with the most severe cases of PCOS may become supersized because of a vicious cycle of insulin resistance and yo-yo dieting. High levels of insulin in the blood lead to weight gain, so women diet to lose weight, only to regain to an even higher weight as the body's metabolism reasserts itself. Concurrent hypothyroidism can greatly exacerbate this gain. Some women develop eating disorders (compulsive overeating or binge eating disorder) as a result of years of dieting, and many experience very strong carb cravings due to hyperinsulinemia. Thus it can be difficult to untie the influence of insulin issues, yo-yo dieting, eating issues, and disease co-morbidities on weight, but there is often a synergistic effect of all of them together.

  In some women, PCOS symptoms accelerate and worsen with time. Those with the most severe cases usually have great difficulty conceiving, often develop diabetes and/or high blood pressure in their twenties or thirties, struggle with sleep apnea and other complications, and become "super obese" at some point from a combination of factors. Co-morbidities like sleep apnea are common, and as a result, many get so desperate they resort to bariatric surgery to try and mitigate their symptoms, regain some mobility, or have a chance at pregnancy.

  In other women, the symptoms stay relatively mild throughout their life or progress much more slowly. Often, normal blood sugar and blood pressure are maintained for years, and the only signs of metabolic derangement are subtle differences in labs; a tendency towards weight gain, reactive hypoglycemia and/or gestational diabetes; and skin symptoms (like sebaceous cysts, acne, or thinning hair).  However, the symptoms often worsen significantly around or just after menopause, and many are diagnosed with issues like hypertension or diabetes at this time.

  A lot depends on the woman's pancreatic beta-cell function. If the pancreas is capable of producing enough insulin to compensate for the insulin resistance in the body, blood sugar remains in the normal range. In those whose beta cell function is compromised, the body is not able to produce enough insulin to overcome the insulin resistance and diabetes develops early.

  Some women think that as long as their blood sugar and blood pressure is fine and they don't want children, PCOS is not a big worry.  However, just because blood sugar is normal doesn't mean the body is okay; it still has to deal with the side effects of too much insulin and too many androgens in the body.  And over the years, this can take a toll, even on those with milder cases.

  How Does PCOS Affect Long-Term Health?

  As women with PCOS age, the metabolic consequences of years of hyperinsulinemia and excess androgens begin to accrue.

  Although you might expect that PCOS symptoms would disappear after the ovaries shut down at menopause, many find that some symptoms actually worsen after menopause instead.

  Hirsutism on the face may get even worse, and the hair may thin even more than before. Acne doesn't go away, and problems like sleep apnea may worsen.
  Chronic overproduction of insulin also tends to lead to hypertension over time, and it exhausts the pancreas. Therefore even those who had relatively good pancreatic beta cell function and normal blood sugar and blood pressure for years tend to develop diabetes and hypertension as they age.

  This means that PCOS has life-long health implications.  The tendency towards blood sugar, insulin resistance, blood pressure issues and perhaps an increased rate of clotting means that vascular disease often develops.  Many women with PCOS develop heart disease, and may also have a tendency towards stroke.

  High levels of androgens may also be connected to the development of non-alcoholic fatty liver disease (NAFLD).  One study found more than three times the risk for NAFLD in women with PCOS, even after controlling for BMI and other factors. Higher androgen levels are thought to be the culprit but this still remains speculative.

  Cancer is another potential risk.  If the woman does not cycle regularly, the uterine lining can build up and endometrial hyperplasia (overgrowth) can develop.  Unchecked, this can lead to a higher chance of endometrial cancer.  PCOS is clearly associated with a higher risk for endometrial cancer.

Is PCOS connected to the development of other cancers?  Some research ties PCOS to a higher rate of ovarian cancer, but research on this is contradictory and unclear. In addition, insulin resistance and hyperinsulinemia may be tied to a stronger risk for colo-rectal cancer. Many researchers speculate that the relatively high rate of unopposed estrogen in PCOS may increase the risk for postmenopausal breast cancer too, although nothing has really been proven at this point.

  The connection between PCOS and these different cancers is still being untangled and answers are far from definitive, but clearly there is an increased risk for endometrial cancer at the very least.

Psychological Effects of PCOS

  Psychologically, PCOS is a brutal condition.
  In its most severe form, a woman is stripped of nearly everything that society sees as womanly, a "theft of womanhood," as some sources call it. She probably is very fat, balding, has a mustache or other facial hair, has acne and body tags, doesn't cycle regularly, and has difficulty having children.  She is seen as sexually unattractive, epitomizes the image of the "ugly" woman in our society, and is the object of many jokes and much derision in the media.  Is it any wonder some women find this condition incredibly demoralizing?

  Addng into this is the lack of understanding around PCOS as a condition.  Even when you have an official diagnosis, some friends and family consider it a dubious finding.  In their view, you're just looking for an excuse for being fat, crying about how your "bad metabolism" causes your obesity, instead of taking responsibility for your supposedly poor eating. They roll their eyes or accuse you of closet binge-eating instead.

  Doctors often don't believe you if you tell them you eat normally either, thinking you must be in denial about your eating, or that you are too uneducated about "proper" nutrition to really understand how to eat healthy.  Furthermore, the shopping cart and food intake of a woman with PCOS are under continuous scrutiny and criticism, adding constant stress to daily life.  The "obese" woman with PCOS always feels on the defensive about her food or exercise habits.

  This disbelief about their experiences and the burden of constant surveillance often takes a considerable toll on PCOS women's self-esteem. And for those who truly do struggle with eating disorders after years of dieting, the shame around dealing with that on top of PCOS can be overwhelming.

  Some resources list depression and/or anxiety as one of the possible side-effects of PCOS.  It's not clear whether the tendency towards this has a physiological basis, is merely a by-product of mistreatment by society, or is a combination of both. Since many women with PCOS tend to have borderline hypothyroidism (and depression can be a symptom of hypothyroidism), there may be a good argument for a physiological basis.  On the other hand, the harassment that women with PCOS receive in society could cause anyone to feel anxious or depressed. Or there may be a synergistic effect between the two.

  Either way, there is no doubt that it is very difficult to be a woman with PCOS in our society. Yet the situation is not without hope.  Many women with PCOS are able to develop a sense of peace with their body, an inner strength to help overcome the biases superimposed by society.  Women with PCOS can be strong and assertive and body-positive; it isn't easy with negative messages all around, but it is possible..

Conclusions

  Clearly, PCOS is a difficult condition that deserves to be taken more seriously.
  Knowledge about PCOS is evolving, but not all care providers are familiar with this condition. Some don't believe it really exists, some believe it's far more about being fat than about metabolic abnormalities, some apply too-stringent diagnostic criteria, while others diagnose it without ruling out other possibilities first. Therefore it can be very difficult to get an accurate diagnosis.

  Unfortunately, there's no one "official" test you can take that will tell you that you do or don't have PCOS. Often diagnosis is less than clear-cut because of co-morbidities and the variability of symptoms.

  So even if you've been told that you don't have PCOS, you might simply be at a less severe level on the PCOS spectrum ─ not severe enough for diagnosis, but not clearly "noPCOS: How Doermal" either. Or you might have a phenotype that your doctor did not recognize.  Or you might have something that looks like PCOS but is actually caused by another condition.  Or you might not have PCOS at all.

  Sometimes the answers are elusive and what you are told will vary from provider to provider.  This is why it's important to keep asking questions, keep searching for a really good provider, always get copies of your labs and tests, and keep a file of them over the years.  It's not uncommon for it to take multiple visits for this condition to get recognized, for testing to be done (or interpreted) incorrectly, or for an optimal treatment plan to be developed.  Persistence and good record-keeping is very important.

  ***In the past, some doctors viewed PCOS as a concern only if you wanted to get pregnant, but research indicates it has significant life-long health implications, including higher rates of diabetes, hypertension, heart disease, and some types of cancer later in life. 

Because of its implications for long-term health, PCOS deserves to be taken seriously, regardless of the patient's age or whether or not they want children. It needs to be seen as a life-long condition, not just a concern tied to pregnancy.


http://wellroundedmama.blogspot.com/2011/09/pcos-how-does-pcos-affect-women.html



Friday, February 8, 2013

First apt. with Dr. Kwak-Kim

Scott and I left WI on Thursday the 7th driving into the snow storm the closer we got to IL, thankfully we made it there ok and found the hotel, got checked in and relaxed. 7:30am Friday morning came quickly, found the clinic and got checked in. I was glad I had asked what they would be doing before the apt. or I may of been lost what was going on.

First up with the external u/s that I drank water for to have a full bladder, after that I got to empty my bladder and undress for the vaginal u/s. That one was interesting as I got to see on the screen her measure the blood flow in different parts of the uterus, she examined the ovaries and found tiny cysts on them consistent with PCOS except I never had polycystic ovaries that my RE ever told me about.  Was in u/s for about a hour then they transferred me to blood. Thankfully she got a vein on the first try, emptying me of 20 vials of blood. Felt a little dizzy afterwards so they took my bp and it was high 150/100. Next was a short physical exam and some other questions on health history with the nurse practitioner. Finally at the end I got to meet Dr.Kwak-Kim and talk with her. She ordered a Thyroid ultrasound at the end as she wants to make sure nothing is going on with it.

Relieved the first apt is over, the hardest part was the LONG drive there and back. We return on March 8th to go over all the test results and she will give me some recommendations. In the meantime I need to consult with my family dr. or a cardiologist to make sure the bp is under control better and continue on my weight loss journey, sticking to a insulin resistance diet.

Thank you everyone for the prayers!

First Apt. Agenda Friday, February 8, 2013

New Ultrasound 7:30 am

New Patient Blood Work  8:45 am

GYN Exam 9:15 am - with M. Sullivan, NP

New Patient Repro 9:45 am - with J. Kwak-kim, MD at Vernon Hills Reproductive Medicine


Thyroid Scan 11:00am


What is Reproductive Immunology?
http://en.wikipedia.org/wiki/Reproductive_immunology
http://www.repro-med.net/repro-med-site2/

Wednesday, January 23, 2013

While I wait ...

Sharing some verses and songs God has shown me in my devotions while waiting for this new apt.

John 14:27  Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Philippians 4:8  Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.


 Proverbs 16:3 Commit to the LORD whatever you do, and he will establish your plans.


Romans 15:4 For everything that was written in the past was written to teach us, so that through the endurance taught in the Scriptures and the encouragement they provide we might have hope.


James 1:2-4 Consider it pure joy, my brothers and sisters,whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.


Tuesday, January 22, 2013

A MUST read book!

So I have been reading "Is Your Body Baby Friendly? by Dr. Beers". It's all about immunology issues and effect on infertility, mc and your health. It was recommend to read before I go see the RI (reproductive immunologist) so I can understand more of what she is testing for and talking about during our consult.

Last night I was reading the part about PCOS and was fascinated by what he said about it. He talked how most RE's will treat the hormonal component of PCOS but there is still a immune issue of PCOS that is not treated by just a RE. That he feels that PCOS is closely related to Diabetes and maybe just another form of it. Right now I am already on the metformin so that is a good thing to help treat the disease. He then went on to talk about serotonin levels and their effect on infertility and link to Chronic Fatigue and Fibromyalgia (of which I suffer from) and even how low serotonin levels contribute to weight gain and if you can raise those levels it will help with weight loss, and also reduce pain which is why antidepressants help those with Fibro. Lack of serotonin also can cause issues with blood flow to the uterous is not relaxed enough to pass nutrients properly through the placenta to the baby. From my understanding all this maybe a result of NK cells being overactive too.
 Lots of info in there all relative to me and so many other woman dealing with failed IVF cycles, mc loss etc. The biggest thing is the health effects and how doing this immune testing should not only show things about infertility but give me clues on my health and treatment for it.

Anyway it's a good book would recommend it to anyone dealing with Infertility. I am looking forward to meeting with this RI in Feb. I think this testing will bring me much needed answers, maybe even a healthier me and prayerfully help me become a mom too. If you want to order your own copy I have a link to it on amazon above in my suggested resources.
 Is Your Body Baby-Friendly?: Unexplained Infertility, Miscarriage & IVF Failure - Explained

Thursday, January 3, 2013

Infertility

I read this the other day and thought I would share:

Reproduction is a bodily function. We take it for granted that our bodies will work correctly.
That eggs are released and tubes are open.
That sperm come in enough number that at some point in the tube the sperm and egg meet.
Then the embryo moves from the tube to the uterus where it implants and gets cozy for about nine months and VOILA you have a baby in your arms.

Except when it doesn’t happen that way.
When ovaries don’t give up eggs or sperm don’t move like they should or come at all.
When tubes are blocked or embryos get cozy there where they can’t live for 9 months.
Maybe the baby makes it to the uterus, but the womb isn’t shaped right or fluffy enough so baby can’t get cozy.
Maybe the baby implants, but hormone levels don’t stay right or blood clots when it shouldn’t or maybe just maybe your cervix can’t hold a baby in.
Most often though there is no answer or why. It just is…

Your body feels broken. Month after month you are reminded that you are not having the child you long for.

Guilt comes in different shades from painful past choices, to food choices, or exercise too much or too little. Maybe guilt is colored in that it is your fault your spouse isn’t having the children he or she desperately wants. The guilt lingers and toys with you. What ifs haunt you just like the child you love, but do not even know yet.

Justice. It isn’t fair. So many babies are abandoned or aborted. When will it be my turn? Will it ever be my turn? Why should I have to go through shots, artificial hormones, treatments that stretch my raw soul until it nearly snaps, when others have “accidental pregnancies?”

Grief. Miscarriages, tubal pregnancies, still-births. They scar and wound and heal slowly. Each hope dashed with another loss and with each loss part of your dream dies too.

Nobody understands. Friends try, but cannot understand the longing, dashed dreams, hope for a few weeks a month until the dream is dashed again. Your spouse doesn’t even completely understand. You both process the situation so differently that you wonder if you will ever have a normal relationship again.

Time seems to be against you. 35 years old is considered advanced maternal age. So few ticks of the clock left.

God is here and sometimes His presence hurts. He is able to open our wombs, but He may not. Ever. He is able to quench our longing, but He may not. His ways are not our ways and we have to learn to trust Him despite the grief, injustice, loneliness, and guilt. He walks this road with us, but we have to choose to let His presence comfort us.

Infertility is a struggle, a battle. There are no simple answers for any one person. Adoption is difficult. Treatments may not work or may not be God’s direction. Only God and the couple He is walking this road with knows which path is best.

Mostly we need prayer. Will you pray with me for the infertile?

Thursday, December 27, 2012

Apt. with Dr. Kwak-Kim in Feb. 2013

A few weeks ago I sent in all my medical records to a specialist. The call came in that she looked over my paperwork and is now ready to see me. I called today and got a apt. set up with her.  (this Dr. is world renowned in helping woman who mc or unable to get preg, get and stay preg, she is a reproductive immunologist)

We go to see Dr. Joanne Kwak-Kim in Vernon hills, IL on Friday Feb. 8, 2013 at 7:30am. Not sure yet but am thinking we may have to go down the night before stay at a hotel, otherwise we will have to leave WI by 3:30 or 4am in the morning to get there in time. It's a 3hr apt. I can't eat after 10pm the night before and have to drink lots of water in the morning cause they do a 2 u/s first, one tests for blood blow to the uterus and the other is a reg vag u/s, then a physical with the nurse practitioner, blood work, then you see the Dr.and talk with her. It's a 3 hour visit.

I talked with the billing dept and cost is 1k for the exam and 2k for blood work. So I have between today and Feb. to raise what we need for this apt and all the testing. Doing this all will be a expense, with our crap insurance the first 3k is all out of pocket before they pick up 60 to 80% so technically we need the opm (out of pocket max) of $6800 saved to continue treatments. I currently have $2500 saved out of our goal of $6800. Unfortunately, when I became preg in Oct. we had to use some of what we had saved for the Dr. visits and then the mc care so our savings is not where it was. At the time we where excited thinking this was it and I would not have to go through anymore testing etc. Not much we could do about it we had to pay those bills too. It was at the time one of my greatest fears that we would mc again and be out the money. All we can do is trust that God will provide. That is what we have done for the past 10yrs of ttc is trust Him one baby step at a time.

I am really really nervous about seeing a new Dr., it's never fun to go through what I have been dealing with the disease of infertility. All the poking and prodding and being nude in front of strangers is never pleasant. At this point though I am willing to try anything we can to get one more chance to become parents and hold a live baby in our arms. I am most afraid she will do testing and find nothing or will find a lot wrong that can't be fixed. I know there is many simple things like blood clotting disorders that are easy to deal with though.

After we see her and do testing then she will work with our RE here in WI to come up with a plan for a FET (frozen embryo transfer) we have 7 snowflakes right now. None of this has any guarantees but then nothing in life really does. All you can do is try.

*Please keep us in prayers that Dr. Kwak-Kim finds answers...that God will provide the money we need for this...for my nerves, safe travel to this Dr.and a happy outcome in 2013.

How you can help: I have paypal donations set up on my HBW page or I still have our magazine fundraiser by clicking HERE if anyone wishes to contribute towards our journey and help us be able to do the testing and later a FET. Thank you so much!

Thursday, December 13, 2012

After a Miscarriage

Last few days have been a real struggle emotionally. The closer to the holidays' we get the more I feel the pain of this last loss. I read this article the other day and thought I'd share it below. I know many don't understand that going though a miscarriage is the same as losing a child, you are grieving, you are in pain, you just don't get over it and move on. That child is part of your life born or unborn and you will always think about them. I wish I could say my family supports and understands this but sadly most of them do not. Hopefully this article will help others to think about reaching out to someone hurting from mc and infant loss. 


After a Miscarriage: Supporting Friends & Family Through Loss

A loss of a child is considered one of the deepest pains, regardless of a child's age. The pain of what would have been is often the most difficult to embrace and work through. Family and friends often feel helpless when someone close to them experiences a miscarriage because no one has any control over it or can prevent it from happening. When a miscarriage occurs, society's attitude is to not talk about it, in fear that it's too upsetting. However, not talking about it only makes it harder to move on.
A miscarriage leaves a woman in a state of physical and emotional readiness for a baby that will never be. Grief is a natural process which has no exact time frame and is experienced in unique ways by different individuals. Supporting a grieving person does not mean you can take away the pain, but you may be able to help lighten the stress by being more aware and well informed.

What do I say? How can I help?

Often parents who are experiencing a miscarriage turn to the baby's grandparents, other family members, friends and professionals (including nurses, clergy, and health care providers,) but can't find the words to express the kind of support they need. As a supportive person, you may feel helpless, threatened or vulnerable. You may even want to avoid dealing with the loss or wish the parents would hide their grief. You can turn these natural feelings into support for the grieving family or friend.

How Can Family and Friends Show Support?

  • Listen, Listen, Listen! A person who has experienced a miscarriage may need to tell his/her story repeatedly. Show you care by your attentiveness, gestures, and eye contact.
  • Be prepared to talk about the baby. Hearing others say the name helps a grieving person heal.
  • Know when to be silent... sometimes it is best to say nothing at all. A grieving person may just want someone to listen.
  • Be aware that grief has physical reactions as well as emotional reactions on the body. Physical reactions include: poor appetite, disturbed sleep patterns, restlessness, low energy, and other pains. Emotional reactions may include: panic, persistent fears, nervousness and nightmares. Encourage your friend or family member to call you or reach out when they experience these feelings.
  • Encourage the grieving person to express pain and stress. By working through feelings such as anger, guilt, sadness, doubt and frustration, the normal process of grief and healing occurs. Continue to encourage communication.
  • Understand that grief is an individual process that is bound by no exact time frame. This frame of time involves finding ways of living with memories and the pain associated with the loss.
  • Reassure the grieving person that their feelings and reactions are normal and necessary for healing.
  • Remember that specific dates or events such as the anniversary of the loss or the expected due date, may trigger an emotional response. Encourage communication during this time. Perhaps a card or small remembrance.

What are some suggestions for visiting someone at the hospital or at home who has experienced a miscarriage?

Just by acknowledging the family's experience and expressing your own feelings of sadness are acceptable. Sometimes when people say "I just don't know what to say," is the most helpful thing anyone can say. Other helpful suggestions include:
  • Talk about the baby by his or her name.
  • Talk about the hopes and dreams you had for the family and the baby. The parents want to know others share in their hopes and dreams, too.
  • Read literature about miscarriage and bereavement.
  • Make or buy something in memory of the baby to keep yourself or to give to the parents.
  • Offer help with housework, cooking, child care, etc.
  • Be sensitive to unpredictable emotional reactions by the grieving parent.
  • Understand that sometimes a grieving person may want to be alone.
  • Offer to keep baby memorabilia until the family is ready.
  • Offer to return maternity clothing or other baby items.

What are some things I shouldn't say or do?

Following a miscarriage, family and friends sometimes say or do hurtful things without meaning to. The following are some potential hurtful words and actions that you might want to avoid when supporting a grieving person:
  • Not acknowledging the loss can be hurtful because for many parents it is important to have their experience recognized.
  • Asking about how one partner is doing and not the other can be hurtful. "How are you, and how is your partner?" shows you care about both of them and you acknowledge they are grieving in their own way.
  • There are no competitions in grief, each person's loss must be respected for the sense of loss and sadness it has for them. Therefore, certain sayings can be hurtful such as: "It was only a miscarriage, you'll get over it," "You're young, you can have another one," etc.
  • Don't try to rush the grief process. This only causes more pain and feelings of confusion, loneliness and inadequacy.

Support is NOT:

  • About giving advice.
  • Criticizing what you have heard.
  • Minimizing the miscarriage e.g. "That's okay, you were only three months."
  • Using cliches e.g. "It was God's will" or "You've already had one healthy child."
  • Talking about your own story of loss. Some identification may be helpful, but keep it to a minimum.
  • Not allowing the person to express emotions such as guilt, shame, and anger.
  • Taking over completely may cause potential feelings of helplessness and powerlessness.
  • Fixing it (you can not take the grief away).

How might a grandparent feel about a miscarriage?

As a grandparent you may hurt twice when there is a miscarriage; for your child who is hurting, and for the grandchild you will never know. It is possible for memories of other pregnancy losses in a grandparent's past to resurface at this time which may make grief emotions stronger. The following are suggestions for ways grandparents can cope with the loss:
  • Allow yourself to talk about your feelings with a family member, friend, or counselor.
  • Allow yourself to grieve; you have also experienced a loss.

What about brothers and sisters?

If there are other children, they will most likely be affected by a miscarriage regardless of their age, and knowledge of the pregnancy. Following a miscarriage, children are often overlooked during time of grieving. It is important to recognize that children grieve according to the stress and loss they feel, as well as to what they see happening around them.
It is important to explain to children on their level about the miscarriage in honest, appropriate, terms they can understand. Children process grief differently than adults and may ask questions, express fears, and act out in various ways to get attention. Young children may be more clingy, easily upset and distressed. Older children may be aggressive, disruptive or unusually quiet. Ways to help include children:
  • Encourage children to ask questions, and express their emotions.
  • Give children who are old enough, the option of being involved in the grieving process. For example, saying good-bye, drawing a picture, planting a tree, etc.
  • Remain patient.

Recommended Books:

  • Stuck For Words — by Doris Zagdanski
  • Good Grief — by Granger E. Westburg
  • Coping with Grief — by Mal McKissock
  • How can I help?: Suggestions for People Who Care About Someone Whose Baby Died Before Birth — by Martha Wegner-Hay
Also remember, you as a supporter of someone experiencing a miscarriage may need to have someone you can talk to. Supporting others through bereavement may be physically tiring and emotionally draining.