Hearing about pregnancy loss, infant loss and infertility are becoming more and more common as more celebrities like Britney Spears and even Royals like Meghan Markle start sharing their stories. However, it is still a very taboo subject, especially in America.

One in Four women will experience some form of reproductive loss during their lifetime. This includes miscarriage (between 3-19 weeks of pregnancy), stillborn (between 20 and 40 weeks of pregnancy), and neonatal death (child born alive but passes away due to early birth or health condition within the first 28 days after birth.)

One in eight women will experience some form of infertility. This can be a direct cause of infertility like PCOS or endometriosis. There are also indirect causes of infertility such as secondary infertility from a spouse like low sperm count.

That is a lot of women/families that experience some form of reproductive loss and/or infertility. When someone experiences a loss of a family member, they are upset and grieve for a long time, and it affects them not only emotionally but mentally and sometimes physically as well.

It is the same when experiencing a reproductive loss. There is an emotional and mental toll it takes on not only the woman directly experiencing but also those around her including the husband/father, siblings, aunts, uncles, and grandparents.

According to the University of Rochester Medical Center, “The depression and anxiety experienced by many women after a miscarriage can continue for years, even after the birth of a healthy child, “ 

During a study of women conducted by Rochester, Emma Robertson Blackmore Ph.D., assistant professor of Psychiatry at the Rochester Medical Center and the lead researcher, said, “Our study clearly shows that the birth of a healthy baby does not resolve the mental health problems that many women experience after a miscarriage or stillbirth.”

In other words, even after a woman experiences a loss and goes on to have a healthy or more healthy pregnancy, does not mean that the mental health issues she experienced after the loss just disappear overnight. They can affect her going forward during her pregnancy and even postpartum.

In another study conducted by the MGH Center for Women’s Mental Health, “Researchers assessed 192 women at their first-year pediatric clinic…In the group, 49% of the women reported a previous pregnancy loss… the women in the study population also experienced a high rate of psychiatric illness during the first postpartum year, with more than half of the women meeting criteria for major or minor depression and more than a third of the women experienced an anxiety disorder. Women with prior pregnancy loss were about twice as likely to be diagnosed with major depression than women with no history of loss. In addition, women with multiple losses were more likely to be diagnosed with major depression, and/or post-traumatic stress disorder than women with a history of one pregnancy loss.”

There is a huge mental health crisis when it comes to reproductive loss and infertility. This is caused by several things.

1. The lack of support available to those going through reproductive loss and/or infertility.
2. The lack of resources for women/families is due to the stigma surrounding the subject.
3. The lack of knowledge in medical professionals of the resources available and the inability to share the few resources they do know about.

According to a survey of UK Health Professionals published in the BioMed Central article Survey of UK health professionals supporting parents after loss from a twin pregnancy, “Health professionals have reported feeling ill-equipped to deal with the specific needs of parents in this situation.”

If the medical professionals that work with these women/families knew about these resources or were willing to share these resources with these families, it would go a long way in the healing process. In the last 10-20 years, there have been several organizations that have been developed. These organizations are usually created after the founder or someone close to them has experienced some sort of loss.

Fabby Philip and her husband are one of those families who have experienced reproductive loss. They were married for three years before they started trying for a child. Fabby has struggled with polycystic ovarian syndrome most of her life which caused irregular periods and makes it more difficult to get pregnant.

According to the article Polycystic Ovary Syndrome and its relationship with infertility and its management, “Ovulation problems are usually the primary cause of infertility. PCOS is the most common cause of anovulatory infertility; ~ 90-95% of women seeking infertility treatment have PCOS. PCOS may cause a higher risk for infertility, type 2 diabetes, high blood pressure, and endometrial cancer.”

According to an article published on Pubmed “Polycystic ovarian syndrome and pregnancy outcome,” The syndrome is associated with an increased risk of pregnancy complications such as gestational diabetes, gestational hypertension, preeclampsia, and preterm labor…women with PCOS seem to experience an increased risk of cesarean delivery while their newborns face increased perinatal morbidity and mortality”

Fabby said, “When we did start trying to have a baby, I would always be hopeful for just one positive pregnancy test. But I was not so lucky. That started affecting me psychologically. I started sinking into a deep depression and started eating a lot. I then started becoming bulimic and was diagnosed with anemia and bulimia nervosa.” This is just one example of how reproductive loss and infertility can affect someone not only emotionally but mentally and physically as well.

According to the article Bulimia and depression, a study of 56 adult females with bulimia was done and the following results were recorded. “43 subjects or 77% evidenced mild depression of which 13 (23%) reported moderate-severe-symptoms by the Beck-depression inventory.” This shows that there is a direct correlation between eating disorders and depression.

Ivy Margulies, Psychologist in Grief, Trauma, Anxiety, and Mindfulness talks about women and mental health.

To listen to the full interview on Rainbow Babies Unite Podcast Episode 4 with Ivy Margulies Click Here

According to a study by Tommy’s which is a charity for pregnancy and baby loss, “20% of women who have had a miscarriage go on to experience PTSD, 16-18% will suffer from anxiety and depression, and the risk of suicide is quadrupled.”

In October 2020, Fabby got her first positive pregnancy test. She said, “Oh how ecstatic and over the moon I was! It made me feel like a woman again. . . Things were going beautifully. My husband was happy. My parents were happy. We rescued a dog named Mr. Pickles… And then it happened… I miscarried.”

After the miscarriage, she visited her gynecologist. Through testing, they discovered that Fabby had no trace of progesterone. After going on 50mg and 100 mg of metformin, the most common form of medicinal progesterone, the tests still came back with no sign of progesterone. These levels were defined as “inability to conceive.” Fabby was heartbroken.

An article published by Medical News Today called Low Progesterone: symptoms, causes, and treatments, defines progesterone as “the hormone responsible for fertility and menstruation… if the body does not produce enough there is a risk of pregnancy loss, preterm birth, and ectopic pregnancy.”

She and her husband decided to “give up” and just take it easy and enjoy each other’s company. “We used the next few weeks in rekindling our connection and spent a lot of quality time together.” This was also their time to grieve together. It may not have looked like grieving, but it was their way of grieving.

Grief affects men and women in different ways. Many have heard the term “grieving process” better known as the five stages of grief. This was a theory of the grieving process developed by Elizabeth Kubler-Ross. Her grieving process included: denial, anger, bargaining, depression, and acceptance. Her book “On Death and Dying” was published in 1969. However, recent research has shown that this does not apply to everyone. Everyone grieves differently and in different orders.

In the Rainbow Babies Unite Podcast episode 5; Sara West, Director of Clinics at the Institute of Reproductive Care talks about grief and how there are no fixed stages or a specific process. You don’t just close the door on one part and move on to the next.

She says, “I think all of us can attest to the fact that we never really stop grieving. We continue moving through our feelings. There are going to be good days and there are going to be bad days. There will be trigger days when we get into a funk for a while and then there will be days when we will be okay.” 

She also refers to Dr. Worden’s Tasks of Grief. These are outlined in the book “Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner by Dr. William Worden. The tasks of grief he describes are listed below.

Tasks of Grief:

Accepting the reality of the loss.

Being able to process the pain.

Being able to adjust to the world without the deceased.

Find the enduring connection

The following clip from the podcast includes Sara’s take on his tasks and her personal experiences after her loss and how she related them to Dr. Worden’s tasks

To listen to the full podcast, Click Here

In the article Bereavement and Grief published in Mental Health America, it says “Coping with death is vital to your mental health. It is only natural to experience grief when a loved one dies…if your grief seems like it is too much to bear, seek professional assistance to help work through your grief. It is a sign of strength, not weakness, to seek help.”

In an article titled “Grief and Pregnancy loss” found on the Life Cycle Counseling website it says, “Research has shown that receiving support for pregnancy loss and taking advantage of grief counseling can reduce mental health symptoms such as long-term depression and anxiety. It is important to understand and accept the reality of loss. It is important to identify and deal with traumatic experiences. It is important to be able to talk about these sensitive topics in a safe and supportive environment.”

They specifically mention two of the tasks of grieving. Understanding and accepting the reality of the loss and identifying and dealing with traumatic experiences.

Both Ivy Margulies and Sara West agree that seeking out a mental health professional after any type of loss is important in the healing process. Many other mental health professionals say the same thing. It is important to find a mental health professional that not only specializes in reproductive loss but also understands the true process of grieving or the tasks of grieving. 

Sky Simone is another rainbow mama who has gone through a miscarriage and received her rainbow baby and her sunshine baby. However, she did not have support after her loss from friends and family and it affected her in many ways.

Sky experienced a lot of anxiety and some depression after her loss and during her rainbow pregnancy. She said, “I did not have any family of my own, just my husband, so I always wanted kids. But I couldn’t feel happy about the pregnancy because I was used to bad things happening to me. Every single OB appointment, I just kind of held my breath until it was confirmed that there was still a heartbeat.”

Reproductive loss affects everyone differently. There is no way to prepare for it, but it is never the fault of the person experiencing it. There is nothing that can be done to prevent it. There are many different reasons why it could happen but doing what they would have, could have, and should have will only make the grief and healing process take longer.

Sky said, “You can’t prepare for miscarriage, but when it happens, you need to prepare yourself for the fact that most people don’t care and don’t understand… I don’t feel that I had any support at the time. When I saw any, I mean none… The grief just weighs me down and I am alone in that, and I feel like I always will be.”

Sky and Fabby both experienced separate versions of mental health before, during, and after their loss. Both were not treated by a mental health professional that specializes in reproductive loss. Fabby was diagnosed with bulimia which led to her anemia and Sky knew she had depression and some anxiety but was unable to seek help for insurance reasons.

Insurance should not be a reason to keep women/families from seeking mental health help for any reason, but especially regarding reproductive loss. These resources should be offered right away. Thankfully between the time of Sky’s loss and the time of Fabby’s loss mental health opportunities have come a long way.

There are many organizations now that provide training to the medical providers that treat these women and families which gives them more information and training on how to handle these losses and how to be more empathetic towards the women/families that are suffering.

Some health professionals may have even experienced reproductive loss themselves and that helps them connect with their patients. Some experience a loss and that is what drives them toward their professional choice.

The owners of partners (in)fertility are an example of this. Dr. Deborah Simmons and Debbie Fischer both experienced either reproductive loss or a birth trauma that led them to their choice of specialty. They now provide counseling and therapies to women who are going through it as well as helping those who experience infertility to figure out what the best route is to build their family.

Dr. Deborah Simmons wrote about her experience in her book “We are always with you.” This book details her journey through giving birth to a micro-preemie and the NICU stay that followed, her journey through her mental health and why she feels that seeking counseling is so important.

According to a study conducted by Ann Herman Lowerkron, published in the Health Care for Women International, “Premature birth, the leading cause of perinatal morbidity and mortality in the United States affects between 8% and 12% of all live births. Approximately 80% of premature births are proceeded by premature labor”

Debbie Fischer also talks about her experience with infertility and pregnancy loss. She details her journey through EDMR therapy which helped her come to terms with her losses and her infertility journey to the point where she still mourns them, but she is also able to treat and help others without bringing back the trauma of her experience.

Click this link to read more about their stories.

Lydia Hammond is a Nurse Midwife who has also experienced loss and helps women who are going through loss or pregnancy after loss. She helps women who have gone through infertility as well. She said, “Do not blame yourself.  So much easier said than done, but there is nothing you did or didn’t do that made this happen.  Give yourself time and permission to grieve, no matter what this was still your baby from the moment you knew.”

The biggest stigma around reproductive loss and infertility is the inability of those outside of those experiencing it to understand the experience.

According to Karina M Shreffler in the article Pregnancy Loss and Distress among US women published in Family Relations, “Although pregnancy loss–especially miscarriage–is a relatively common experience among reproductive-aged women, much of our understanding about the experience has come from small clinic-based or other nonrepresentative samples.”

Many feel that it is something that women should just get over and move on with. However, this is not the case. It is not as simple as a grieving process where you go through steps 1-5 and boom the grieving process is over. There is so much more than that and yes it can get easier with time but there are good days and bad days, and everyone handles it differently. It doesn’t happen overnight and will not happen without support.

The more people can talk about reproductive loss and infertility, the more women will be able to talk about their experiences instead of shutting down. Raising awareness and removing the stigma around reproductive loss allows women and families the chance to share their stories without feeling ashamed. 

Talking about a loss or infertility journey and any of the mental health surrounding it should be no different than a veteran talking to someone about what they saw during deployment, or a child seeing someone because of dealing with divorce or some other trauma.

Reproductive loss, NICU stays, and infertility journeys all have their trauma attached and the silence needs to be broken so these women/families can receive the help they need to grieve properly and gain the support they need to get through the journey.

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