The AFA Blog

Surviving the Guilt of Infertility

By Iris Waichler, M.S.W., L.C.S.W.

             In a blog I recently read the author described her “survivor’s guilt”.  She  experienced two pregnancy losses and has been trying to conceive since 2006.  Her blog described her multiple attempts at intrauterine inseminations and IVF transfers without any success.  She candidly described the darkness and emotional and physical pain related to these multiple losses.  I wondered what she meant by guilt?

            She went on to explain that a life changing seminar she attended had made her recognize that it was up to her to release the emotions and sadness linked with these multiple losses.  She discovered that the sadness and guilt she had placed on herself for failing to have a healthy child had emotionally and physically caused her to be immobile.

She believes that women have a choice about how to deal with the painful episodes caused by the inability to conceive a child and become a parent.  She chooses to believe that she will become pregnant again at some point in the future.  The author thinks she lost some readers because she chose not to continue to describe the darkness she felt and is focusing on feeling positive and better.

            I was struck by an observation she made that I believe is true.  She described the gap that occurs between someone who is trying to conceive, becomes pregnant, or decides to adopt, and those that are still trying to conceive.  Her theory is that once you become pregnant there is a sense of guilt about those who are not pregnant but were there for you when you were trying to conceive.  She believes a successful pregnancy can make you feel as though you have left them behind and nobody speaks about it or understands what to say or do.  

            I led a parenting after infertility group for several years and guilt was a recurring theme.  My group participants also expressed fears that something would go wrong with their pregnancy because of past failures.  They described feeling guilty for being pregnant and having friends still struggling to get pregnant.

            This dilemma is something many have experienced.  It is a delicate balancing act allowing yourself to be happy about your own pregnancy and being sensitive to others who are still trying to get to where you are.   Anyone who has been infertile can describe the savage emotional and physical impact it has on their lives.  You become a member of a club nobody wants to belong to.  Yet, this club’s members offer each other unconditional ongoing support and understanding.  Suddenly you are not a member of that club. If you are among the lucky who eventually have a healthy child those memories are not erased.  I believe room can be made to experience the joy of conquering infertility and simultaneously sharing feelings of encouragement and compassion with those you know who are still trying.  If you have a close relationship with another person who is infertile and you feel comfortable enough to discuss this issue it can ultimately strengthen you relationship.  You both have to be willing to take that chance and express what you need from each other.  In the end this experience may be a source of comfort to all the participants.

Iris Waichler is author of Riding the Infertility Roller Coaster

A world on fire.

  by Corey Whelan

It feels like the whole world is on fire right now.  Civil unrest and natural disasters have been nudging the stressometer up notch by notch in our collective unconsciousness for awhile now, I think.  I remember reading newspaper articles years ago about the Cold War and how constant anxiety about the bomb was increasing the daily stress that Americans (and I'm sure Russians too) lived with, like a sort of  low level whirring sound in the brain that you forget is there, but that never really recedes.  

Headlines this weekend about that fool, that monster, that idiot in Florida and the violence that has ensued since he burned the Koran pumped up the jam just enough to flip me out completely.  It just feels like open season now, not just on Americans world wide, but on the whole species Human Being.  As it has always been, I guess.

I thought about all this while I was running this morning.  Three miles in and I started to think about stocking up on bottled water.  Five miles in and I started to think about the talk I need to have with my children about all this and how I don't want to.  Seven miles in and I remembered the reason why I started running in the first place.

Many of you who haven't known me for forever find it hard to believe that once upon a time I weighed around 50 pounds more than I do now.  Pregnancy with multiples, and a marriage that was shredding itself to bits turned into a lust for bagels, maple syrup and low fat dulce la leche frozen yogurt that I deluded myself into thinking was ok for me to eat on a daily basis.  And then 9/11 happened.

My babies were small then.  I remember thinking, if I have to run out of a burning building with one kid under each arm, would I be able to do it?

And the answer was no.  I was too overweight and out of shape to run and get my babies and myself to safety if I ever needed to.

So I went for a walk.  A very long walk.  And a few days later I went for a run.  A very short run.  And I threw out the bagels and all the high carb crap I had let my PCOS insulin resistant body get addicted to and I slowly became my old, healthy-weight self again.  Strong, thin, and robust.  My own personal best for my own physical self.

People, look.  I don't know what's coming next, none of us do.  But I do know that no matter what comes, and also no matter what doesn't come, the species human being, all of us, deserve the right to be our own personal best.  For me it's being a runner who weighs 115 lbs.  For you it may mean being a walker or a tennis player who weighs 135 lbs.  But whatever your own personal health best is, I urge you to acheive it.  It is better for your fertility.  It will be better for your pregnancy and your baby, God willing.  It will be better for you no matter what life brings.  Really.  

Think about maybe joining in and doing what The AFA staff will be doing for NIAW.  Think about doing a Fertility Bootcamp, if that feels like a fit for you.  Think about doing something.  And then just do it.  

I don't know what's coming next.     

The Unsung Heroes Behind Surrogacy

 

by Iris Waichler, MSW, LCSW

The recent birth of Nicole Kidman’s daughter has brought surrogacy back into the spotlight.  Surrogacy is a treatment option for women who are unable to successfully maintain a pregnancy and have a health baby on their own.  There are two types of surrogacy, traditional and gestational.  Traditional surrogacy is when the surrogate is inseminated with sperm from the infertile woman’s husband or partner and there is a biological connection to the baby.  Gestational surrogacy is done more frequently. It means the intended mother or an egg donor’s eggs are used and the intended father or a sperm donor gives sperm to create an embryo.  The resulting embryo is transferred to the gestational surrogate There is no biological link between the surrogate and the baby. Surrogacy is generally an option when other infertility attempts have been unsuccessful. It is the most complicated family building option in terms of medical, financial, legal, and societal challenges. 

            Sharing a pregnancy with another woman presents its own set of challenges. A surrogate can be a family member, friend, or complete stranger.  They dynamics of this most delicate of negotiations can be influenced by the existing relationship between the parties involved.   Each surrogate arrangement involves mapping out a unique agreement   with ongoing dialogue between the consenting parties about what role the intended parents will play in the pre-natal care, pregnancy, labor, and birth of the child.  Issues like what role will the surrogate play in the child’s life after birth must also be explored. What happens if something unexpected like a medical problem during pregnancy occurs?  Who makes decisions about the medical treatment for the baby and the surrogate? 

            In her recent New York Times article, “Meet the Twiblings,” Melanie Thernstrom described taking time out to meet the husbands of the two women who eventually became her surrogates. I remember saying “bravo” out loud as I read that.  I thought about it and realized that was the first time I heard somebody recognize the significance of the husband of the surrogate. Ms. Thernstrom said “The role of a gestational carrier’s husband is in some ways more difficult then that of the carrier herself.”  I thought Fie, her surrogate, stated it beautifully.  These husbands are “a bystander to a miracle who partakes in the inconvenience of his wife’s pregnancy but has fewer of the emotional rewards.”  The surrogate and her husband as a team must respond to questions and concerns that arise from their own children, other family members, friends, and sometimes the judgments imposed by society.  The husband is directly impacted in the event that a medical problem arises during the pregnancy.

            Hilary Clinton said “it takes a village to raise a child.”  In the world of infertility it sometimes “takes a village” to create a child.  It takes a special woman to agree to be a surrogate and give the ultimate gift to people wanting to build a family. I believe it takes a special husband to support his surrogate wife in making this possible.  We should honor and acknowledge the role of these men and women. You can be sure the lucky families that find them do.

 Iris Waichler, MSW, LCSW, has a Master’s Degree in Social Work and has been a licensed clinical social worker for over 30 years.  She has done workshops, individual, and group counseling with people experiencing infertility.  Ms. Waichler is the author of the award winning Riding the Infertility Roller Coaster: A Guide to Educate and Inspire.  She currently writes freelance infertility and health related articles.

 

Twins are everywhere!

by Jamie Schenk DeWitt

Next time you are walking down the street or jogging in the park, notice how many double or even triple strollers there are.  I was at the park yesterday with my 21-month-old twin daughters and saw three pairs of twin strollers and one set of triplets!  

Based on figures from the American Society for Reproductive Medicine, approximately 30% of couples that undergo ART (Assisted Reproductive Therapy) will give birth to twins versus 1-2 % of spontaneous pregnancies.  

Below are two of the reasons why:

1.  Fertility drugs that are prescribed to patients encourage the ovaries to release more than one egg during ovulation.  

 2. During the embryo transfer of an IVF (In vitro fertilization) cycle, doctors often implant more than one embryo in the womb.  (Ever since the infamous Octomom debacle fertility doctors have been under fire for implanting more than one embryo, but -- needless to say -- depending on the woman’s age,  infertility diagnosis and doctor’s medical evaluation, sometimes it may make sense to implant more than one embryo).  

The first consultation that my husband and I had with our fertility doctor he asked us,   “How do you feel about having twins?”  Spontaneously I responded, “Great!  I would love it.” Our physician went on to inform us that there was a greater chance of having multiples when using assisted reproductive methods.  Because I was so distraught over not being able to get pregnant naturally it seemed like a blessing to get pregnant with one baby, let alone twins.

8 months after our initial visit with our fertility doctor, I was pregnant with twins.  It was one of the most joyous days in my life.  After all of the failed treatments, it felt like a miracle that I was pregnant.  And since being pregnant with twins put me in the high-risk pregnancy category, I was consumed with staying healthy, and the reality of what it meant both physically and financially to take care of twins after they were born did not faze me right away.  Yes, we bought two cribs, two car seats and a double Snap-n-Go stroller (an essential item) in preparation for their arrival.   Yet, the notion that we would have to do two of everything at the same time, -- two diapers, two feedings, and two baths – did not hit me until the morning they were born. Literally, my life changed in an instant. 

The challenges of their first three months, from trying to figure out how to simultaneously breastfeed two babies, to consoling two hysterically crying infants, to learning how to synchronize their schedules, so I could get some sleep at night were tremendous.  I can still remember the first night that I was alone with both of them.  The baby nurse and my mom had left to go back to their respective cities and my husband was working late.  I had successfully positioned both girls on each breast in the football position for their evening feeding.  However, when it came time to give them each a bottle (I had to supplement with formula since I didn’t produce enough milk for two babies) all hell broke out.  They were both crying.   I couldn’t figure out how to hold both of their heads up at the same time to give them their bottles. It was a disaster.  By the time my husband came home, I was bawling.  

Needless to say, I ended up figuring out how to manage that situation, but in the process I felt awful.  It would take several months of trial and error for me to feel like a “mother of twins.” Taking care of my daughters was the most difficult job that I had ever encountered, but with each new challenge that I conquered, I found my voice as a mother.  I learned how to trust myself, rely on the advice of other parents of twins, and use parenting experts in my community.  I also drew incredible strength from observing my spectacular girls grow and develop.  I was proud of who we were becoming as a family and with this newfound confidence, I never shied away from taking them to the park, classes, play dates or the grocery store by myself, which believe me, felt like quite an accomplishment at the time. 

Over the course of the first year I can still clearly remember the comments and looks that I got from other parents or strangers when they would see me out with my twin daughters.  

 “Wow twins!  You’ve got your hands full.”

“Are they twins?  So adorable!”

“Twins!  Two for the price of one.” (If they only knew how much IVF cost)

“A boy and a girl?”

“Are they identical?  Wow, they sure look identical don’t they?”

“You sure have a lot of energy for having two babies.” 

“They must keep you on your toes.”

“Agh twins.” (Insert look of desire) “I wanted twins, but I didn’t get so lucky.  I only have one baby.”

“Agh twins. How’s that going for you?” (Insert look of terror)

“Two babies.  Bet you’re busy.”

“I can’t believe you have twins!”

 Dead silence.  (Insert look at the babies, then look at me. Enough said.)

“Are you enjoying both of them?”

“So precious!”

“Do you have help?”

“Oh my God – Twins!  I could never imagine.”

“She looks so much like you.” (Pointing to the daughter who looks exactly like her father)

“They are so adorable.  You must get sick of hearing that?  They sure must keep you busy?  Okay I’ll leave you alone.”

“A boy and girl?  No.  Two boys.” (One is dressed in purple and the other in hot pink.)

 “You are so lucky and blessed.”

“That’s a lot of work.”

“Do twins run in your family?”

So whether you are taking care of one baby, two or three babies, motherhood is a journey and not a destination. Enjoy the ride because it all goes by so fast!   And just realize that if you need fertility treatments, know if you are willing to have a multiple birth, and know all the facts, both medical, emotional, and practically speaking. 

 Even though we did not plan on having twins when we began our fertility treatments I have learned from my own experience, as well as that of other mother’s of twins that the question of whether or not it is safe to have multiples is one to be taken very seriously. There are tremendous risks to both mother and babies when someone attempts to have a multiple pregnancy and you should make sure that you discuss this in depth with your doctor prior to conception being attempted.. 

 According to the Society for Assisted Reproductive Technology (SART).  the objective of infertility treatment should be the birth of a single, healthy child.  Multiple gestations, meaning twins or greater, can pose significant health concerns.  These include but are not limited to:

• Increased Rates of Miscarriage
• Increased Rates of Fetal Death, Even After Birth
• Cerebral Palsy:
• Increased Levels of Nausea, Heartburn and Vomiting during Pregnancy
• Pre-eclampsia (High Blood Pressure)
• Gestational Diabetes:
• Placenta Previa
• Heart Problems, Including Heart Attack for the Expectant Mother:
• Increased Need for Partial or Complete Bedrest, and Limited Physical Activity:
• Emotional Issues, including the possible need for Mutifetal Reduction
• Increased Rates of Caesarian Section Delivery
• Complications after Birth such as Development Delays or Autism

A sobering, and partial list.  It is important to note that not all twin pregnancies are problematic, many like mine, only posed temporary challenges that we as a family were able to overcome.  The American Fertility Association will be publishing several significant commentaries on this issue during 2011, as well as a fact sheet and video on elective Single Embryo Transfer, later on this month.  In depth information on all aspects of mutliple birth will be covered.

The Amazing Story of the Birth of the “Twiblings”

by Iris Waichler, MSW, LCSW

           For those of you who haven’t read it I strongly encourage you to read Melanie Thernstrom’s New York Times Magazine article called “Meet the Twiblings” at http://www.nytimes.com/2011/01/02/magazine/02babymaking-t.html.

Ms. Therstrom and her husband use an egg donor and 2 different gestational carriers that end up giving birth to twins that are born 5 days apart. I loved this article for many reasons.  She candidly discusses a multitude of issues that will be familiar to many who experience infertility.  Examples include:

1.      Beginning infertility treatment later in life.

2.      Finding a doctor that will show empathy but be honest about your best chance for success in having a healthy baby.

3.      Unscrupulous surrogacy and egg donation agencies.

4.      Legal challenges of surrogacy.

5.      Societal judgements about infertility treatment, surrogacy, and egg donation.

6.      What role do you want your egg donor and surrogate to play in your new family’s life?

We learn about Ms. Thernstrom starting out at age 41 meeting her eventual husband.  She undergoes 6 treatment failures in her attempt to have a baby. Her doctor poses a critical question that changed her life.  He asked “Is your goal to have the experience of being pregnant or is your goal to have the best chance of having a healthy baby?”  I believe that question is not asked often enough by physicians.  It is the primary question those who have had repeated fertility treatment failures need to ask themselves.

This article is filled with valuable information those in the midst of infertility treatment can apply. There is a wonderful description of meeting the 2 women who eventually become her surrogates. Fie, one of the surrogates, goes over the surrogacy agreement line by line and she and Ms. Thernstrom carefully discuss scenarios so they have a clear agreement about how to proceed. They talk about whether the surrogates will provide breast milk after the baby is born? Consider questions you must ask like who pays living costs if your surrogate is unable to work due to the pregnancy?

The surrogate’s husbands were involved and met with the Thernstroms. The role of the surrogate husband is important and is rarely considered.  Their support is invaluable during their wives pregnancy.  Ms. Thernstrom observed her surrogates in their roles as parents and that was a major consideration for her in choosing them.

We learn about Ms. Thernstrom meeting her egg donor.  It was important for her to meet the donor.  Some choose to use an anonymous donor.  She describes looking at the woman who became her egg donor and thinking “When she flashed a smile, I wondered if I had caught my first hint of my child’s grin.”  There is that natural inclination for the perspective mother to make comparisons between herself and her egg donor.  Consider your feelings about that and what role if any you want your egg donor to play in your future child’s life.

The Thernstrom’s speak with the director of their egg donor agency about disclosure. She recommends “tell everyone or tell no one.”  Disclosure is one of the more challenging aspects of infertility.  You need to decide if you want your child to hear directly from you in your own words about their birth.  You may risk your child possibly learning from someone else. How  will that impact your child and your relationship with him/her?

Using a surrogate or an egg donor requires a huge leap of faith. You have to trust that the donor is honest about their medical history.  You want to believe your surrogate will take all the necessary steps you would to be as healthy as possible during the pregnancy.

Ms. Thernstrom coins the phrase “twiblings” to describe her children.  The same egg donor was used and the embryos were transferred the same day. The kids were born 5 days apart from two different gestational carriers. She also uses the word “Fairy Goddonor” to describe her egg donor.  Much like Sarah Palin’s word “refudiate” I hope these words should become an accepted part of English language.

            I thought a lot about this remarkable story. This particular case involved a small “village” of people united together to create a family. I applaud the courage of Ms. Thernstrom for telling her story in such a public forum.  She has gotten both praise and unwelcome comments from friends, professionals and strangers.  I realized that all of us have a unique story to tell about how we become a family. It is our choice how and whether to tell it or not

Nurturing the Nature of My Child

 

by Iris Waichler, MSW, LCSW

           Many of us have been exposed to the argument about what shapes the personality of children, nature or nurture. Nature represents heredity and nurture equals environment in this equation.  It is an especially compelling question for those of us who have a child through adoption or through the generosity of a donor.  What impact does genetics have?  How effective can I be as a non-biological parent?  These were thoughts that I had after the birth of my egg donor daughter. 

            We chose a donor that had my physical characteristics.  Grace was born with dark brown hair like mine.  She had dark hazel eyes with wisps of brown. My eyes are brown.  Over the 10 years since she was born there have been several comments about how much we look alike.  As far as I know she does not have the “cancer gene” that my family members carry.  I have followed the lessons learned from the genome research examining our DNA and genetic heritage with great interest.

My 35 years as a social worker have led me to lean on the side of nurture. It feels safer, more familiar, and something I sometimes fool myself into thinking I have some control over.  I have heard those stories about identical twins raised apart that do end up differing in behaviors and other ways. I am perhaps naively optimistic that my behavior, parenting effectiveness, and the home/life environment we have created can help her grow into a healthy, intelligent, happy adult. I have reluctantly let go of my desire to see her become a softball all star. She shows no interest in sports of any kind.

Shortly after Grace was born I went to a lecture about raising an only child. The psychologist speaking told us that genetics does play a part in creating ability and some traits (aside from physical) are influenced by the child’s environment.  I do know Grace and I share the same sense of humor, a discipline about completing our work, and the joy of spending time with good friends and family.  Our values are similar as is our love of pop culture.

The conclusion I have drawn from all of this is rather than nature vs. nurture it is really a combination of nature in conjunction with nurture.   I remember that psychologist I heard use the words “cause and effect.”  I think now after a mere 10 years of parenting under my belt I have a better understanding of what she meant.  Even if we are born with a genetic disposition, there is not a 100% guarantee that something will occur in this predetermined way.   Medical interventions are available.  Lifestyle changes have a big impact.  Behaviors can be shaped and nurtured.  I choose to believe anything is possible.

Iris Waichler, MSW, LCSW, has a Master’s Degree in Social Work and has been a licensed clinical social worker for over 30 years.  She has done workshops, individual, and group counseling with people experiencing infertility.  Ms. Waichler is the author of Riding the Infertility Roller Coaster: A Guide to Educate and Inspire. She currently writes freelance infertility and health related articles.

Source:

http://www.theafa.orgplay/library/article/what_to_expect_when_expectinga_donor_child/

 http://www.ivf.net/ivf/behaviour-nurture-not-nature-says-ivf-children-study-o5597.html

Filling the Loneliness of My Only Child

  by  Irish Waichler, MSW, LCSW

           Can I have a dog?  That is a question my 10 year old daughter asks me frequently.  I am sure many of you have gotten this question.  Her follow up line is “you know I am an only child and since you can’t have any more children a dog would be a great companion for me.” Ouch!  My kid knows how to get to the heart of the matter. People often underestimate how tough secondary infertility can be for all concerned.

              I believe on some level she senses the guilt my husband and I feel that she will never have any siblings.  I have thought about it and discussed it with my husband.  Being an only child can be a mixed blessing for children.  She gets our undivided love and attention.  She has pointed out the joy of having her own room and not having to share her possessions. She has joked about the certainty of inheriting an admired piece of my jewelry.  I see her loneliness sometimes when I offer to play with her and understand she is looking for the companionship of a peer.  I think about the responsibility and perhaps burden she will inherit being the only caretaker for her elderly parents.

            What can we the parents of only children do to help them?  The first thing I did when she was old enough was to have a conversation with her acknowledging that I understood the hardship being an only child was for her.  I explained that I also wished I could have had more kids.   We talked about the reasons adoption and additional pregnancies were not options.  

            What I have done is to create almost daily opportunities for her to be with other kids.  We are fortunate that our neighborhood block is very kid friendly.  She participates in camps, activities, and school related programs.  She has a wonderful instinct (like a big sister) to help younger kids by playing, supervising, and reading to them.  I encourage invitations for kids to come to our home so she has that much needed companionship.  She has seen through us that friends can be like family.  We have created a tight family network with kid cousins and other relatives we see as often as possible.  This gives her a solid sense of family relationships and their ongoing importance in our lives. They will be in her life long after I am gone.

            We travel frequently and so a dog remains out of the question.  Her aptly named hamster, Speedway, is the newest member of our family.  He has become something of a companion for her.  He certainly does not erase her being an only child.  She loves talking, playing, and taking care of him. Grace takes comfort from the sound of his wheel as he leaps on it to do his nightly marathon.   She knows when she gets old enough having a dog will be an option.  I know as she gets older the foundation we are building today will help her to continue to have love and people in her life to help ease the loneliness she inevitably will feel.

 Iris Waichler, MSW, LCSW, has a Master’s Degree in Social Work and has been a licensed clinical social worker for over 30 years.  She has done workshops, individual, and group counseling with people experiencing infertility.  Ms. Waichler is the author of Riding the Infertility Roller Coaster: A Guide to Educate and Inspire. She currently writes freelance infertility and health related articles.

The Infertility Family Research Registry

By Judy Stern, Ph.D.

How do we find out about the safety of fertility treatments? How to we discover whether fertility treatment causes health problems for women and children? Do we know whether reported health risks are a result of treatments for infertility or the underlying infertility itself? Are men with fertility problems susceptible to additional health risks? In order to fully understand the answers to these questions more information is needed and studies must be done that include large numbers of women, men, and children. Information has to be collected over many years, be both pre- and post-fertility treatment and it must include people who have had fertility problems as well as those without: those with children and those who never have children.

The Infertility Family Research Registry (IFRR) was developed to help get answers to these questions and to resolve some of the more challenging disputes related to infertility and infertility treatment. The registry is designed to collect information on health history and treatment history of women and men. Volunteers also enter data on the health of any children. This information is used by researchers to search for answers to many of the above questions. The registry also provides a bridge between volunteers and researchers who want to do additional studies to help find out about long-term health and well-being of people who have experienced infertility.

The concept is simple. Volunteers enter information about their health, about their fertility treatment history, and about any deliveries and children. As experiences and health status change, volunteers come back to the registry and enter additional information. The information is pooled and summarized to study the outcomes. Data entry is easy and multiple safeguards are in place to help keep information secure. Only minimal personal information is collected and this is only used to keep in touch with volunteers. Names and other identifying information entered by volunteers are never associated with any published reports. Through the Infertility Family Research Registry, individuals can find out how similar or different their own health outcomes are from those of others with the same diagnosis and treatment history. Rare health conditions may also be identified and the prevalence of these may be revealed.

 One of the reasons that large numbers of volunteers are needed to study the health affects of infertility is that infertility is a complex disease. There are many reasons for infertility including female factors such as endometriosis, polycystic ovary disease, or recurrent miscarriage and male factors such as low sperm count or failed vasectomy reversal. There is primary and secondary infertility. Fertility therapy may be needed due to family structure or single parenting. There are many solutions to family building that include treatments such as intrauterine insemination or in vitro fertilization, use of donor gametes, and help of a surrogate. There are decisions for child free living and there are solutions through adoption. As we explore health risks of infertility we need to understand the causes, the treatments and the interaction between cause and treatment as these affect all members of the infertility community.

 The Infertility Family Research Registry was developed with a federal grant from the National Institutes of Health. It is similar in concept to registries that have been developed for many other diseases. These include registries for breast and colon cancer, heart disease, and a number of childhood illnesses. IFRR has the support of many physicians and researchers and the national professional organizations that represent them such as the American Society for Reproductive Medicine (ASRM) and the Society for Assisted Reproductive Technology (SART).  Patient advocacy groups such as The American Fertility Association and Resolve are strongly supportive of this effort.

 As we collect information into the registry we will periodically post summary results on the IFRR website. More extensive studies will be submitted for publication in professional journals and these results will also be shared and summarized on the website. We will keep in touch with volunteers on a regular basis to request updates and to share data.

 Check out the registry at www.ifrr-registry.org . Find out what you can do to help in this effort.

Judy E. Stern, PhD is a Professor of  Obstetrics and Gynecology and Pathology and Director of Human Embryology & Andrology at the Lab at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire

The Emotional Challenges of Choosing Egg Donation

by Iris Waichler, MSW, LCSW

 I was 42 years old when I started my infertility journey. My only treatment option was an egg donor.  My husband asked if it would be hard emotionally bonding with the baby we desperately hoped would come.  I had talked to others who expressed doubts about not having a genetic link. They were afraid of its impact on their ability to bond and parent.                                                                                 

I honestly never experienced these reservations.  I understood I would not have a genetic link but a “biological” one.  I knew my blood would flow through my future baby. My baby was dependent on me to survive during my pregnancy. Those bonds were strong for me. My genetic history was not problem free.  My mother died of breast cancer.  I had additional cancer history in my family. I was grateful that my future baby would not inherit that.

I remember sitting at our kitchen table with a pile of forms submitted by potential egg donors.  We had waited 9 months to receive them. We couldn’t believe this moment had come. There was information on their ages, physical characteristics, ethnic/racial backgrounds, education levels, and work histories.  Some explained why they wanted to be donors.  Medical and psychological information was available. What surprised me was how uncomfortable I felt having to make a choice.  I didn’t like being in the position of deciding if a college education was better than a high school education.  Maybe she didn’t have the money or support needed to go to college.  Perhaps she didn’t want to go to college.  We had to make choices with the limited information in front of us. We used an anonymous donor and didn’t have photos to influence us.     

Finally something I could control during infertility treatment yet I felt conflicted about having to make decisions based on our donor information. I was aware the choice we made today could potentially impact our lives forever.  This moment was one of the most challenging during my infertility experience.  One donor had completed high school. I read more and learned there was a history of alcohol use in her family and she was working in a bar. That was a red flag for me.  Was that fair? 

I realized we were totally dependent on the information presented to us.  We had to trust that women who generously offered to be egg donors were honest about their histories.  We knew the agency we were working with had an excellent donor screening program.  It is a leap of faith and you hope for the best.  You just do your research to ensure the donor and program used are reputable.

Years later I was privileged to meet a panel of egg donors at a conference. I wondered how it felt being on the donor side and what their donation reasons were. Their explanations were diverse. Their conviction that egg donation was the right thing to do to help others who couldn’t have a child was universal.  None of them expressed a desire to know the children born as a result of their egg donation. They happily accepted the necessary sacrifices.

When you select an egg donor carefully consider what is important to you.  Do you want to meet your donor?  Should you share an ethnic background?  I wanted my child to have physical characteristics similar to mine since we would not have that genetic link.  Those of us who become parents as a result of egg donation are given the greatest gift one can imagine.  I never forget that.  I try to be the best parent I can as a way of thanking her.    

Iris Waichler, MSW, LCSW, is a licensed clinical social worker who has counseled people experiencing infertility.  Ms. Waichler is the author of the award winning book “Riding the Infertility Roller Coaster: A Guide to Educate and Inspire”. She currently writes freelance infertility and health related articles.

Painkillers in pregnancy and male babies

by Maria Portella  

In the written press as well as on the  internet these last couple of weeks, particularly in Europe, articles have started to appear, stating that common painkillers could be linked to male reproductive disorders.  It was reported that scientists had found a link between the use of mild painkillers in pregnancy and the risk of giving birth to a son with undescended testicals with the possible consequences of having both poor sperm quality, as well as the potential for the emergence of testicular germ cell cancer in later life.

The study was done by researchers from the University of Copenhagen as well as other academic and medical institutions in Denmark, Finland and France.

The study featured both an analysis of pregnant women’s medication use and also data on animal research studies which analyzed testes development in rats; one potential outcome of the study indicated that the timing and duration of the mild painkiller use during pregnancy was linked to the risk of undescended testes in male babies. The research also suggests that ibuprofen, aspirin, and other nonsteroidal anti-inflammatory painkillers act as hormonal "endocrine disruptors" thus interfereingwith normal male sexual development.  The greatest window of risk appears to be in the second trimester of pregnancy in humans.

To anyone reading the headlines these articles might be worrying at first blush.  For example, it seems to suggest that even paracetemol (acetaminophen) may increase the risk in male babies (to a lesser degree).  

In addition, there are many women presently being prescribed low dose aspirin during pregnancy to address cases of miscarriage risk or blood-clotting disorders (it is important to note that low dose aspirin is only a quarter of the regular, standard dose). Women in this situation may feel in a conundrum about what to do when managing the relative risks of both taking, and not taking, this medication.  First up the advice to anyone pregnant that has taken such painkillers and is concerned about these findings is clear:  consult with your doctor.  

The British NHS Choices website states: "It is preliminary but important evidence, although at the moment, it is unlikely to change the current recommendations to pregnant women. These are to: avoid medications in general and to use paracetamol rather than ibuprofen or aspirin if painkillers are needed. However, advice should always be sought from a GP or midwife before taking medication."  And if your doctor has recommended that you take medication, such as low dose aspirin, consult with him or her as to what to do, if anything.

 Some believe that there are shortcomings to the research, for example, small sample sizes and the number of analyses involved reducing the certainty of its finding.  The direct causal link has not firmly been proven.  Nor does it examine the case of women who have been taking low dose aspirin (quarter the standard dose).  Also, there are many other studies which show the benefits and upsides of taking the low dose for miscarriage risk/blood clotting issues on doctor's recommendation.  Therefore the reports do need to be read with caution.  What is clear is that this is an important area which needs more urgent research.  While the rates of undescended testes seen in the study were still relatively low, it seems, as unfortunately happens with reporting in the press, the risk factors quoted can vary from article to article and some of the headlines can be alarmist, suggesting a 'global sperm decline'. 

The NHS Choices website concludes: "Overall, this study does not prove a link between use of painkillers in pregnancy and this reproductive disorder in boys but it does suggest an important avenue for more research."  Let's hope this research and investigation happens swiftly. As always, it is better to be informed than ignorant, however, information such as this may put a lot of pressure on the reader to think critically as a result - which is easier said than done if it affects you personally. 

No matter how level-headed you are normally, to anyone who has suffered or is suffering from primary or secondary infertility, reading such an article could prove to be quite unsettling.  Whatever your situation, it is essential to consult with your doctor if you are or have been taking mild painkillers and are worried in order to address any concerns you may have.

 Maria Portella is originally from the U.K. and now resides in the West Indies.  Her special interest is promoting better education about fertility amongst working women.  She reached out to The American Fertility Association because she wished to share her story.

Photo: Courtesy M. Portella