Aren’t You Excited?

Every time I tell someone that we’ve reserved a donor, they immediately respond, “I’m so excited for you!”  When I’m less enthusiastic than they, I get a puzzled look followed by, “Aren’t you excited?”

This is a hard question.  I don’t really get excited about well, anything.  My emotional baseline is pretty low.  I’ll never be a Miss America flapping her hands and covering her mouth and bursting into tears.  That said, this, like so many other steps in our process, is complicated.

Am I happy we have a donor and are one step closer to our family?
Yes.

Am I ecstatically jumping up and down in my living room?
Not so much.  Practically, this means we start the process again.  More testing.  More scheduling.  More meds.  More injections.  More traveling.  More planning.  More stress.

Is it all still a little unreal?
Absolutely.  We’ve spent more than two years trying to conceive, almost a year addressing infertility, and two months waiting for a donor.  We probably have at least another year before we meet our child.  Believing this is actually happening isn’t so easy because not much is happening.

Am I sad?
Also, yes.  It’s confusing, but reserving a donor is also a reminder that I will never have a child of my own.  It makes it all real again, and all the emotions from the first and second times our doctor suggested an egg donor come right back up.  And while we are stepping closer and closer to having our family, it’s still an open, aching wound.

 

#2561

reserved

Last Thursday, (Aug. 17, 2017) was week 8 of our search for an egg donor.  It was also the day we selected donor #2561 to be the mother of our children.

As usual, I missed her.  My husband called me from the shop, where he was also checking the database, to ask me if I was looking at the blonde.  I wasn’t.  I was mid-refresh, and the screen took forever to load.

I opened her profile front page.  She’s 19, Italian, 5’4, 120 pounds, and blonde.  She is an egg vit donor with 12 frozen eggs.  Her childhood pictures are cute.

I downloaded her file.  She carries no genetic disorders.  In skimming the medical history, there are no diseases or disorders in her family.  Not a single one.  None.   The only item checked in the entire family history is that her mother had acne.

Her educational background showed a 4.5 high school gpa, a 28 ACT score, and a 1000 SAT score.  She’s studying law and forensics.  She also competed in volleyball and track.  She runs a 4 minute 50 second mile.

In less than two minutes, I was urging my husband to “click on her!” fearing I wouldn’t make it back to the reservation button before she was gone.

I got to the button first.

She’s ours.

 

Guest Post: Celtic for Sorrow

The author of this guest post is a teacher and ranch wife who spends her days wrangling calves and kids.  Warning: This is a graphic story of our experience with child loss.  It may not be for everyone. It may not be for anyone.  But writing it soothes my soul.

Nobody talks about it, partially because it is taboo, but mostly, because it is such a fragile, painful subject.  It is so hard to expose ourselves, to say “I understand,” and to share our memories.  It’s hard to talk about a piece of ourselves that we have lost.  Yet one in every four women suffers a loss of a child, be it miscarriage, infertility, or the loss of an infant.  That number doesn’t seem like a lot, until we look around and really talk to the women in our lives.  All it takes is the door opening for people to flood in with their own heartaches and losses.  I never realized how many people experience this loss until I became one of them. So it is time to share.  It is time to share with those who know that loss and feel our pain.  We join a community of the broken hearted.  And slowly, we heal.

*************************************************************************************

Part 1.

Whispers.  For the last year of my life, whispers have followed me everywhere I go.  They’re often accompanied by the look- you know the one: full of pity, full of confusion, full of kindness but also full of uncertainty about what is expected.  Sometimes they’re accompanied by awkward hugs, pats, well-meaning questions, and thoughts of sympathy.

But this is just the surface of the pain.  This is just the tangible reminder of the loss I have been through and that my grief is visible to everyone around me, no matter what I do to hide it, because they are watching me.

*************************************************************************************

In May of 2016 I collapse in my classroom with no explanation.  An ambulance ride to the emergency room left my husband and I with no answers, and a doctor who tells me to “Take it easy now that school is out for the summer.”  Stress was the cause of my issues, they say, and hypertension.  Fair enough- class sponsor, ranching, and teaching take a toll.  They order a CAT scan to be sure it wasn’t a seizure, only after I am grilled by the doctor about being pregnant.

No, we couldn’t be.  Lack of regular cycles, connected with the belief that I couldn’t have children due to PCOS (Polycystic Ovary Syndrome) made it almost an impossibility.  The two pregnancy tests I’d taken three months before on a whim because I’d been peeing more frequently both read negative.  I chalked it up to drinking more water than usual.  No weight gain, no tenderness, no missed cycles- nothing that would make it seem like we were pregnant.  But twice, three times, the doctor asks.  It is possible, I allow, but unlikely.  He eyes me and goes on with his tests, finally reaching the conclusion of stress.  We go home, and for two weeks I feel steadily worse.  We make two more trips to the ER. We come home with painkillers for the cramps in my legs that make it impossible to stand, sit, or even breathe, but no answers other than take it easy.

As my husband rushes me to the ER for a third time, our world ends.  I give birth to our stillborn daughter on the porch of our home.

There are no words to describe a moment like that.  Shock. Disbelief. Horror. Fear. Anger.  Numbness.  There is no way to capture the moment where I scream for my husband as I try hopelessly to resuscitate a child that later the doctor will tell me has been gone for two days.

What follows is a blur.  Our family is called and rushes us to the Emergency Room- this time of a different hospital.  On the trip there I hold our daughter, clinging, because some part of me knows that my time is limited.  My husband begs me to cover her face because he can’t bear to see her.  I’m calm, even though everyone around me is panicking, rushing.  My husband asks if we should name her, and I settle on the first thought that comes to my mind: Deirdre.  Celtic for sorrow.  In my haze I know that, for me, this child and sorrow are the same.  At the hospital they take me in for a checkup, and I place my daughter in a newborn tray.  It’s the last time I see her.

How does a woman react to giving birth, without even knowing she’s pregnant?  How does a college educated, smart woman, not realize she’s pregnant?  But most of all, how does a woman deal with the emotions of receiving the gift of a child she’d never expected, never believed she could have, and the loss of that child all in one instant?

I spend the next three days in the hospital, fighting for my life.  The advanced stages of eclampsia are shutting down my body, one organ at a time; while the doctors fight for my life, I struggle to hold it together to plan transport, autopsy, funeral, and family arrangements.  People shuffle in and out of my room, knocking timidly, telling me they’re sorry, and to get better.  The shock on their faces barely registers until on the second day I’m allowed to leave my bed and catch my reflection.  I don’t even recognize myself: my hair is tangled, my face is sunken—a stranger.  I am literally so weak that I, the wrangler of 50 pound feed sacks, can’t even hold my phone to respond to the concern of coworkers.

On the fourth day they release me, more out of futility than anything else.  It is the day of the funeral, and I will not be held.  We don’t publicize the loss of our daughter, but still, our small community fills the cemetery to the point I want to collapse as I reach the graveside.  Seated on a bench, I watch as the preacher who married us speaks over a tiny coffin my husband’s grandfather built, a tiny coffin lined with green satin for our redheaded Irish babe.  I hold it together for the people watching, only sobbing briefly as my husband lays his show cattle comb and a rose from my wedding bouquet into the grave with her.  We bury our child, our unspoken dreams, a piece of our marriage, on a tiny hillside cemetery next to my father.

That’s the last memory I have for the next six months.
****************************************************************************************

Part 2.

The day we buried our daughter I went away.  Not physically.  Physically I returned home from the funeral, greeted the family and friends that came to the service, and sat with our friends from college who had driven hours to be with us the instant we called and said we needed them.  We talked, quietly, about anything but what we had just been through, recounting stories, memories, and upcoming experiences.

But I was gone.  Emotionally, mentally, I had disappeared.  I have no idea where I went.  Some mothers describe it as “a place within themselves.”  I don’t know about that.  I just know that wherever I was, there was nothing but grief and numbness.  For two weeks I sat, silently, in a darkened room, working on homework for a master’s class I’d already paid for and had to complete, but I was working only a small bit of that time.  I slept for huge periods, recovering the strength I’d lost due to my bout with eclampsia, reminded every time I tried to stand for a drink of water that I was not myself.  I tried to talk to my husband, only to realize there were no words, and I couldn’t talk without sobbing anyway.

And the days passed.  Cards of sympathy came.  Phone calls from friends and neighbors came.  Close family friends came.  And the days passed.  The summer ticked by slowly as I regained strength and started to become more myself.  I went to our niece’s stock show and spent a week recovering from the car trip and my spot in the stands.  And the days passed.  My body spent weeks recovering, from eclampsia but also from pregnancy.  My milk came in, a bitter reminder of the baby buried two miles up the road, causing me to spend nights curled in a ball, sobbing, as my husband held me, and when asked what’s wrong I could only say,  “My soul hurts.”  And, yet, the days passed.

I went back to work, struggling every day to make it through and feeling like I was getting my life back together but still feeling like I was underwater.  I threw myself into my career and tried to keep a balance at home, making it through a series of bad days and days that just were.  I counted the days I’d survived, every month anticipating the 26th with dread and losing myself a little less and less each time it arrived.

In one of the grief books that the hospital gave us was a summary of grief.  It said, grief is like the ocean- it comes upon you in waves.  It can be a calm sea, with waves that crash upon you only once in a while, or it can be stormy, with waves battering you so often that you can’t keep your head above water.  The description resonated with me- I was drowning in my grief.  And as I struggled and rose above the waves, I thought I had it under control.

It wasn’t until the fall, six months after we buried our daughter that I finally woke up.  A bitter fight with my husband- unusual for us- brought forward the words, “Where are you?  No matter where we are, or what we do, you’re not there.  I miss YOU.  I miss US.  And I don’t know what I can do to get that back.  Just tell me what to do.”

That’s the thing about grief.  It’s selfish, by nature.  It demands all your attention.  As I was trying to manage my ocean of grief, I forgot I wasn’t in the boat alone. Although I hadn’t considered this my loss alone and I had done my best to help my husband heal, his stoic demeanor made it so easy for me to pretend the world was okay and just power through.  It wasn’t until that night that I realized, my pain was literally his pain, and I had to get better for us.

It was not an easy process. It’s gradual, continual.  I made the daily decision to be present, to be with the people around me, to experience joy again.  Twice a day I struggled to look at the student in my classroom who was due the week our daughter was born and not lose it.  I forced myself to do something, anything, for Christmas, usually my favorite holiday, but now one I longed to skip, with the chorus “Christmas is for kids” ringing in my mind.  I still retreated into myself for days at a time, but I started getting better at being in the real world.

During the weeks following Deirdre’s burial, I lost count of the number of people who came to us and shared, “I had a child once…..”  My husband’s grandmother told of the baby they lost at twelve days old.  My sister–in-law spoke of the miscarriage they experienced before our niece and nephew were born.  A friend from college shared her struggle with infertility as she and her husband tried to build their dream of a family.  They say 1 in 4 experiences the loss of a child or the unfulfilled dream of a child.  I don’t believe that- I think that number is much higher.

 

A Little Q&A

q-and-a

I’ve had some questions about our IVF process, donation, and the database; hence, today’s post.  If you have questions or are just curious about any part of the process, please send them my way.

Is the database regional? National?
The database we are using is our clinic’s Colorado database.  Our clinic has a number of locations in several major cities in the U.S. and Canada.  However, recipients use the database in their city.  There are donor agencies and databases, regional and national, private and corporate.  I even had an email one day specifically about an agency specializing in Jewish egg donors (thank you internet tracking). 

IMG_2570

While we are welcome to use these other services, their donors have not been through the extensive screening process of our clinic.  According to our donor nurse, 97% of women who apply to be donors do not qualify.  Therefore, it is in our best interest (both financially–someone has to pay for all that qualifying testing–and in time) to use the prescreened donors in our clinic’s database.

Can someone you know donate?
Yes.  The clinic will use “known donors.”  These women are typically sisters or close friends of the recipient.  However, they also have to undergo the testing and screening.

Do you know how many people are looking for an egg donor?
No.  But I haven’t asked either.  I’m sure our nurse could give us a rough estimate of how many families are actively pursuing a donor.

Can you reserve a donor and then back out?
Technically, yes.  And it does happen, but only rarely.  When we missed that great donor in Week 2, I asked our nurse if anyone ever changes their minds.  She said it does happen.  Sometimes a recipient accidentally reserves the wrong donor.  Sometimes after the review with the genetic counselor, a recipient may change her mind.  In the eight weeks we’ve been looking, we’ve seen one donor come back into the database.

What happens when you reserve a donor?
Good question.  In our experience with IVF, it’s been mostly acquiring information on a need-to-know basis, especially since many, many factors can change the plan.  So, the process that follows selecting a donor is a little complicated: it depends on the egg type, fresh or egg vit, and if CCS testing will be performed.

If a fresh donor is selected, a calendar will be drawn up that works with both the recipient’s and donor’s schedules (avoiding any blackout dates for both).  Then the women’s cycles will be aligned.  The donor will take a round of priming medications and stimulation medications (just like I did for our egg retrieval). At about the time of ovulation, she will have the retrieval done.  That same day, the eggs will be fertilized with the male recipient’s sperm.  The lab monitors and grows the fertilized eggs for five or six days (to the blastocyst stage).

At that time, they grade the embryos.  If the recipient couple elects to perform CCS testing (to check for chromosomal anomalies), DNA is extracted from the embryos, and the embryos are frozen.  A few weeks later, the test results are returned. Anomalous embryos are discarded, and the highest quality embryo (or two) are thawed for transfer to the recipient.

If the couple does not want CCS testing, the recipient is taking medication to prepare her uterus for transfer while the donor is taking her priming and stimulation medications. While the eggs are undergoing fertilization and the embryos are growing to the blastocyst stage, the recipient has daily blood work and ultrasounds to make sure her uterus is prepared for transfer.  At the blastocyst stage, the embryos are graded, and the best one or two are selected for transfer.  At the best possible time (based upon blood work, ultrasound, and embryo monitoring), the embroyo(s) are transferred to the recipient.  Remaining embryos are frozen.

If the donor is an egg vit donor, the process is slightly different.  An egg vit donor cannot commit to aligning her schedule with a recipient’s.  However, rather than lose a qualified donor, the clinic allows the donor to do a retrieval cycle on her schedule.  She does the priming, stimulation, and retrieval as usual.  Once her eggs are retrieved, all are frozen, and the donor enters the database.

When a couple selects an egg vit donor, they do not have align schedules. The first decision is still if CCS testing will be done. If so, the eggs are thawed and inseminated using a fresh sperm sample from the recipient husband.  They are grown to the blastocyst stage, graded, DNA is extracted, and they are vitrified (frozen).  Meanwhile, the recipient female is priming for transfer.  After the testing results are returned and in alignment with the recipients’ cycle and calendar, the best embryo (or two) are thawed.  As with a fresh transfer, the female recipient is being monitored daily, and when all the factors are right, the transfer is performed.

If no CCS testing will be done, a calendar is created based upon the recipient’s cycle and schedule.  The female recipient takes her medications to prime her uterus for transfer.  About a week before the anticipated transfer date, the eggs are thawed and inseminated.  Over the next several days, they are grown to the blastocyst stage.  Meanwhile the recipient is undergoing her daily testing.  Again, when the time is right, the transfer is performed.

Regardless of the egg type and testing decision, at the time of transfer, the clinic estimates a recipient couple will need to be at the clinic for approximately eight days.  Also, at the time of transfer, an embryo is actually about a week old, so pregnancy timelines must be adjusted to reflect not the transfer date but the fertilization date of the embryos.

What is CCS testing and why would you do it?
CCS, or Comprehensive Chromosome Screening, checks the numbers of chromosomes within an embryo.  It checks make to sure there are 23 paired chromosomes (2 chromosomes for #1, 2 for #2, etc.).  Primarily, it reveals embryos that are missing a chromosome or have an extra chromosome.  Most embryos with missing or extra chromosomes will not be viable.  They will not fertilize, will not grow, or will result in a miscarriage.  Identifying and eliminating these aneuploidy embryos decreases the risk of failed transfers and miscarriages.  In addition, there are some chromosomal anomalies that are viable, like trisomy 21, Down’s Syndrome.  Women who have lower egg quality (like me) or have multiple miscarriages often undergo CCS testing.  It also shows gender, XX or XY.

Can couple use an embryo with a chromosomal anomaly?
Our clinic will not transfer any embryo with a chromosomal anomaly, including a viable one, even if is the only embryo available to the couple.

How is CCS testing different from the genetic testing done on the donor and recipients?
Prior to any IVF cycle, our clinic offers couples the opportunity to complete carrier screening. (All donors undergo the screening as well.)  This DNA test checks for certain genetic disorders like cystic fibrosis, Tay-Sachs disease, and fragile X syndrome (among dozens of others).  My husband and I had this testing done and learned that he is a carrier of Mucolipidosis.  This could be a serious issue if I (or our donor) was a carrier also.  There are also some genetic disorders that are are single gene disorders and do not require both parents to have the gene in order for the child to be effected (like cystic fibrosis, Tay-Sachs disease, and fragile X).  If both parents are carriers of a two-gene disorder, CCS testing would be highly recommended.

 

 

Digging through the Donor Database

library_5When we hear the word database, we think of a deep depository of data.  I picture one of those old-fashioned, dark wood, immense libraries with ladders on rollers to reach the books that soar several stories high.  This library contains hundreds and hundreds of entries and correlated information that can searched and divided and categorized and mined for revelations.

While our donor database can certainly be searched and divided and categorized and mined for revelations, it’s not ripe with hundreds and hundreds of entries.  Finding an egg donor isn’t simply a matter of spending the time to do the research.

Over the last seven weeks, we’ve had between zero and four new donors any given week.  The total number of donors available at update has ranged from two to seven, far from the hundreds of entries we think of when we hear “database.”  However, what our database lacks in breadth, it makes up for in depth. The quantity of information provided about each donor is frankly overwhelming.

Database Front Page
The donor search begins on the database front page which contains an overview of the available donors:

ID#: four digit identification number assigned to the donor by the clinic
Status: available or reserved
Egg Type: fresh or egg vit
Height: donor’s height
Weight: donor’s weight
Eyes: donor’s eye color
Hair: donor’s hair color
Race: donor’s race
Ethnicity: donor’s ethnicity
Age: donor’s age

Most of these categories are pretty self-explanatory.  However, status nearly always says available because once a donor is reserved she vanishes from the database within minutes.

The egg type refers to the cycle for which the donor is available. A fresh donor is available to coordinate her reproductive cycle with that of the female recipient.  This will allow the donor eggs to be fertilized and a number of the resulting embryos to be transferred to the recipient mother without freezing (a fresh transfer).  Any remaining embryos are frozen for future use.

The other option is an egg vit donor who has vitrified eggs.  These donors are unable to commit to coordinating their cycles with recipient’s.  Instead, after stimulation and retrieval, their eggs are frozen (vitrified), and their profiles are placed in the database. Included in these donors’ profiles is the number of eggs available.

Donor’s Front Page
After skimming the database front page, I select a donor to learn more about.  By clicking on the donor ID, I am taken the donor’s front page.  At the top is the all-important Reserve button.  The page also features two pictures of the donor as a child.

This page also contains information from the GeneVu Carrier Screening which tests for common genetic disorders.  Any positive tests are noted as well as the worldwide statistics for the disorder or disease (written as 1:256 for example) and the statistical likelihood of a child being affected if conceived with a partner who tested negative (also written as a number like 1:7500).  For example, if my husband were to donate, this page would include the information that he is a positive carrier of mucolipidosis and the statistics for that disease.

From here, I can access the donor bio, a massive pdf detailing the donor’s medical history, social traits, and personality.

Donor Profile

Page 1: Physical Characteristics
This page asks donors to identify their age; year of birth; state of birth; height; weight; family’s ethnic background (Caucasian, Hispanic, etc.); religion born into; adoption status; the ancestry of mother, father, maternal and paternal grandmother and grandfather (German, Irish, etc.); and blood type.

The page continues with donors checking boxes for each of the following:

Body Type/Bone Structure: small, medium, large
Hands: right, left, ambidextrous
Eyes
Color: brown, hazel, green, blue
Set: narrow, average, wide
Size: small, average, large
Shape: round, oval, almond
Shade: light, medium, dark
Hair
Natural color: blonde, brown, black, red, other
Color as young child: blonde, brown, black, red, other
Shade: light, medium, dark
Fullness: thin, medium, thick
Texture: fine, medium, coarse
Nose
Size: small, medium, large
Width: narrow, average, wide
Length: short, average, long
Nostril Flare: small, average, wide
Cheekbones
Set: low, average, high
Prominence: slight, medium, strong

Page 2: Physical Characteristics Continued
Mouth
Size: small, average, large
Lips: thin, average, full
Chin
Shape: square, oval, round
Prominence: slight, average, strong
Cleft: none, slight, medium, strong
Skin
Tone: light, med-light, medium, med-dark, dark
Tan Ability: none, slight, medium, easy
Condition: oily, medium, dry, combination
Acne: none, slight, medium, severe   At age: ­­_____
Other Facial Features
Moles: none, one, several, numerous
Freckles: none, several, moderate, numerous
Dimples: none, slight, medium, deep
Eyesight
Vision: normal, far-sighted, near-sighted
Glasses: none, single, bifocal, trifocal
Astigmatism: yes, no               Age Diagnosed: _____
Dental
Device: none, braces, retainer, other
Reason: cosmetic, accident, disease, other
Age during use: _____ to _____ years of age
Other:    list _________________                    Reason/Cause _______________

The next section (still page 2) asks for the following descriptions for the donor’s mother, father, brothers, and sisters: eye color, hair color, complexion, height, body type/weight.

Page 3: Personal Characteristics
Level of education _____________________
Completed grade school yes no
Completed high school  yes no  GPA _____if no, GED yes no
Completed Technical/Vocational/Certificate in _______________
Completed some college in _______________  Years completed _____
Currently in college, pursuing a degree in _______________
Completed college, degree in _______________
Currently pursuing an advanced degree in _______________
Completed an advanced degree in _______________
SAT score ________  ACT score ________
Current Job Title _______________
Languages:  Speak _______________ Read _______________ Write _______________
Athletic Activity: athletic, active, average, inactive
What physical activities do you engage in?

Page 4: Personal Characteristics Continued
Have you excelled in any physical activities?
Manual Dexterity: dexterous, average, clumsy
What manual skills do you have (e.g. typing, sewing)?
What have been your achievements as an adult?
What other skills or talents do you have (e.g. painting, writing, reading, ability to do games, crossword puzzles, handcrafts, etc.)?  Please describe.
Musical Ability: musical, average, tone deaf
Voice: soprano, alto, tenor, baritone, bass
Instrument: ________________ years of experience _____
Other: _______________ years of experience _____

Page 5: Reproductive History
What is your sexual orientation?
Age at first period _____  Are your cycles regular? yes no
Interval between periods _____ days
Pregnancy History: Year _____ Outcome _____ Any Complications _______________
Did your mother take DES while she was pregnant with you?  yes no
Have you ever been diagnosed with infertility? yes no  If yes, explain.

Page 6: Medical History
Allergies (food, pollen, bee stings, medications, etc.):
Describe childhood allergies you have outgrown:
Do you have any medical illnesses (asthma, diabetes, seizure disorders, etc.):
What are you bleeding tendencies: do you have frequent nose bleeds, bleeding gums when you brush your teeth, and/or menstrual periods with blood clots?
Type of birth control used:
List the drugs, prescription and non-prescription, that you take regularly:
Any other medicines taken in the last 5 years:
Do you smoke cigarettes? ­­­­yes no   How much?
Do you consume alcoholic beverages? yes no
If yes, how many drinks (beer, wine, alcohol) do you consumer per: Day _____ Week _____ Month _____
Have you ever used any kind of mind-altering drugs such as marijuana, LSD, heroin, or cocaine?  If yes, please give details and state last date used.

Page 7: Medical History Continued
Have you been sexually active during the past 6 months? yes no
Are you currently sexually active? yes no
Are you in a monogamous relationship? yes no
If no, then the number of partners you have been sexually active with over the past 6 months:
Have you or a partner of yours ever had a sexually transmitted disease (gonorrhea, syphilis, chlamydia, herpes, condyloma, or trichomoniasis)? yes no
If yes, describe your diagnosis, year and treatment:
Have you received a blood transfusion within the last 12 months? yes no
Have you been exposed to radiation or toxic chemicals in your work or personal life? yes no
Have you receive a bite from an animal suspect for rabies within the last 6 months? yes no
Have you ever had eye surgery? yes no  If yes, describe.
Have you been told of any gynecological problems (endometriosis, fibroids, ovarian cyst, abnormal Pap smears, etc.)? yes no  If yes, describe.
Have you ever received treatment by pituitary-derived human growth hormone? yes no  If yes, describe.

Page 8: Family Health History
The donor must address each of the family members (mother, father, brother(s), sister(s), maternal grandfather, maternal grandmother, paternal grandfather, paternal grandmother, and children) in each of the following categories: age (if living), age at death, medical problems, or cause of death.

Page 9: Family Health History
This page contains a series of charts identifying medical conditions and asking the donor to check any family member (self, mother, father, sibling, maternal grandmother, maternal grandfather, paternal grandmother, paternal grandfather, child) who have the condition. For any checked condition, the donor is asked to elaborate (i.e. age of onset and treatment).

Heart: stroke, heart attack, heart disease, hardening of the arteries, high blood pressure, heart condition from birth
Blood: anemia, sickle-cell anemia, hemophilia or other bleeding problem, leukemia, immune deficiency, other blood disorder
Respiratory (Lungs): asthma, emphysema, tuberculosis, lung cancer

Page 10: Family Health History Continued
Gastrointestinal: ulcer of stomach or duodenum, gallstones, Hepatitis A (infectious), Hepatitis B (serum), cirrhosis, colon cancer, ulcerative colitis, Crohn’s disease, cystic fibrosis, intestinal cancer, any other cancer/problem of digestive system
Metabolic/Endocrine: diabetes mellitus, hypoglycemia, thyroid cancer, thyroid disease, goiter, adrenal dysfunction or disorder

Page 11: Family History Continued
Urinary: kidney disease, other disease of urinary tract (urethra, bladder, ureter)
Genital/Reproductive: undescended testicle, hypospadias, prostate cancer, uterine fibroids, ovarian cysts, cancer of cervix, ovaries or uterus
Neurological: migraines (severe enough to seek treatment), mental retardation, dementia before age 50, multiple sclerosis, cerebral palsy, epilepsy, hydrocephalus, disorder of the spinal cord, Huntington’s chorea

Page 12: Family History Continued
Neurological Continued: Gaucher’s disease, Wilson’s disease, Creutzfeldt-Jakob disease, Alzheimer’s disease, other diseases of the nervous system, Parkinson’s disease, hyperactivity, autism or related autistic spectrum disorder
Mental Health: schizophrenia, bipolar or manic depressive, depression, anxiety

Page 13: Family Health History Continued
Muscle/Bone/Joints: muscular dystrophy, other chronic muscular disorder, lupus, deformity of the spine, osteoporosis, dwarfism, hereditary low back disease, arthritis, gout
Sight/Sound/Smell: deafness before age 60, deformity of the ear, cataracts before age 50, blindness, color blindness, glaucoma, deviated septum, other sight/sound/smell disorder

Page 14: Family Health History Continued
Skin: acne, eczema, skin cancer, pigmentation disorders, other disorders of the skin
Other:  alcoholism, drug abuse, misuse or addiction, breast cancer, any other cancer not mentioned above, any other condition not mentioned above, unexplained fevers within the last 3 months

Page 15: Family Health History Continued
Here the check chart is replaced with a chart to complete.  This chart asks the donor to identify any birth defects (to bones, muscles, joints, limbs, gastrointestinal system, nervous system, brain, spinal cord, blood circulation, respiratory system, organ (heart, lung, kidney, etc.), genitourinary, metabolic hormones, enzymes, etc.) of any family members. If any birth defect exists, the donor must elaborate on the defect, who it happened to, when it happened and relevant circumstances.

Do you have any brothers or sisters who died in infancy or childhood? yes no
If yes, what was the cause?
Are there any known genetic diseases or conditions that run in your family? yes no
Has anyone in your family, including yourself, experienced recurring and/or chronic physical symptoms that have not been evaluated by a physician?  (please include those symptoms you may not consider serious)  yes no   If yes, please explain.

Page 16: Your Childhood
Describe yourself as a child (e.g., personality, health, happiness, etc.)?
What was it like growing up in your family?
What religion did you belong to as a child?
What is your earliest memory as a child?
What problems did you have as a child (e.g., health, allergies, learning, social, etc.)?

Page 17: Your Childhood
When I was a child…..
My favorite thing to do was
At home I was expected to
My parents were strict about
My parents taught me to value
What I loved most about my father was
What I loved most about my mother was
My favorite relative(s) were
I loved to visit
In comparison to others, I was

Your Teenage Years…….
Describe yourself as a teenager.
Describe your achievements.
Did you do poorly at anything?
Did you have any problems as a teenager (e.g., health, acne, social, educational, etc.)?

Page 18: Your Childhood Continued
What do you hope to achieve by volunteering in the egg donor program (e.g., emotionally, financially)?
What message would you like passed on to the recipient of your eggs/their offspring?
What helped you decide to become an egg donor?
How would you describe yourself?  Please include a description of your personality and temperament.
Describe your philosophy of life.
Who do you aspire to be or are most influenced by (e.g., historical figures, family members, etc.)?
Who is your favorite music group or singer?

Page 19: Your Childhood Continued
What is your favorite book and/or movie?
What are some of your favorite things you might collect? (e.g., favorite flower, music, animals)
What do you see yourself doing in the next 5-10 years?
What would you like your recipient couple to know about you that has not already been asked?

Page 20: Genetic Counseling Notes
This page discusses any medical conditions or diseases identified by the donor that may be hereditary.  A genetic counselor employed by the clinic provides information about the condition or disease, defining it, giving statistical prevalence (if relevant), and explaining treatment (if possible).  It also includes a thorough discussion any diseases of which the donor is a carrier.  It explains what the disease is, how it effects an affected person, links to ethnicity, statistical risk of having an affected child, and treatment.

 

Overwhelmed?  Now imagine trying to absorb all this information in less than five minutes. Every Thursday I’m competing against a clock that I can’t see.  With every second that ticks by, someone else may click reserve, and the donor I’m reading about could be gone.  The first time it happened I was shocked to see the top of the page turn pink and a “Reserved” banner appear.

So, I skim.  I check the front page for a physical match and then look at the bios of those women (if there are any).  I skip straight to the educational background section, only very, very briefly skimming the health sections.  After all, everyone’s family has health issues: it’s nearly impossible to find someone without a family history of high blood pressure, heart disease, or even cancer.  Plus, the major illnesses are explained in further detail on the last page within the genetic counselor’s notes, which I also skim.

Thursday: Week 7

black fridayDonor Thursdays are like Black Friday.  Knowing the ridiculously early time the store opens and that Donor Thursdays are supposed to bring great deals, the anticipation begins.  We discuss and plan, identifying the product we’re hoping to find.  If we can just get what we’re looking for, we can make everyone happy.  Knowing the chaos that is Donor Thursday, we also strategize.  We’ll divide and conquer, taking on different sections of the store.  We look forward to the potential and dread the chaos.

Like Black Friday, we know Donor Thursdays are crowded.  There will be more people wanting the great deals than there are flat screens. However, when we line up outside the door, we can’t see our competition.  We can’t observe how many others there are or how aggressive they’ll be or overhear which great deal they’re shopping for.  We log in alone, knowing that elsewhere in cyberspace others are doing the same.  We all obsessively refresh our screens, trying to make sure we’re first in line for our perfect donor.

But there’s another twist to Donor Thursday: the database doesn’t come with a sales flier, so we can pick out what we want.  Instead, we shop from an image in our hearts, looking for a donor that may not even exist.  When the database opens, we have precious little time to examine complex options with steep prices that never perfectly align with our wishes. We rush to judgement, knowing that at any moment an unseen shopper may snatch the donor from our very hands.

Even worse, there’s no guarantee that there will even be any donors.  Imagine pushing your way through the crowds, rushing to electronics only to find that they’ve already sold out of the 72″ flat screen.  Even worse, there are no televisions at all.  You and all the other electronics shoppers are disappointed and go home empty handed.

This was the scenario on Donor Thursday: no new donors.  We’d anticipated and strategized and waited in line and rushed to the update, and the database contained a total of two donors, the same two who have been available since we began shopping.

But, there is one more important difference between Black Friday and Donor Thursdays: Thursday comes every week.

Thursday: Week 6

I’m posting the Thursday update on Sunday because my life is chaos right now.  I start back at work tomorrow and have spent the last couple of weeks frantically preparing.  This busyness is curse and a blessing.  The stress is pretty high (but at least it’s stress that I can actually DO something about for a change), and it’s also keeping me from having too much time to think.

Thursday I was on campus for meetings.  I also had to leave town as soon as I was done which created a timing snag.  By the update at 5 p.m., I should have been an hour into my drive and would have had to check the database on the side of the road from my phone.  Needless to say the website isn’t really cell phone friendly.  So instead I stayed late.  I had plenty of work to do anyway.  This meant I was sitting at my desk in my office waiting for the update.

As every week, I was nervous; I obsessively refreshed the page.  I went through the whole dramatic countdown, again.

Shortly after 5 p.m., the database updated.  One new donor.  At a glance, she wasn’t an ideal match, but I flipped through her profile anyway.  I didn’t love her.  I called my husband, who was also trying to get out of town, to verify; he didn’t love her either.

I refreshed the screen a few more times just in case.  She remained, but a donor with vitrified (frozen) eggs who had been in the database since we started looking was reserved.

Today, when I checked again, the new donor was also gone, leaving just two available donors.  One has been there since we started looking and the other almost that long.

Since the chaos is only beginning, this week I have an evening meeting on Thursday, so I’ll again be sitting at my office desk for the update.

Disclosing Donation

Some of you may remember MTV’s docu-series Generation Cryo which followed sixteen children of sperm donor #1096 in their search for each other and their donor.  (Watch the whole season here if you missed it: http://www.mtv.ca/shows/generation-cryo).  During its airing in 2013, I DVR’d the series and watched it with intrigue (oblivious to the fact that one day donation would be part of my daily life).

The dynamics of the siblings with each other, their families, and their search for their donor were fascinating.  Some of the parents were upset by their children’s desire to find their donor; others were as curious as their children.  While I understood why a parent might be nervous or saddened by this investigation, I identified more with the children who wanted more information about their biological father.  It seemed only logical to me to want to know about the person who makes up half of your genetic code.

Donor #1096 was part of an anonymous donation program.  The families who choose him as a donor had only the limited information from his cryo bank profile.  The lead in the show, a daughter named Bree, along with a few of her bio-sibs used the profile to try to track down their bio-dad.

Obviously, all of these children knew that they were conceived using donor sperm.  They were, after all, on a television show about it and had met on a website to unite donor children with their biological siblings. However, disclosing donation is not always a given.  Some parents choose to tell their children from a very young age; others wait until they feel their children are “old enough” to understand.  Some children find out accidentally or not at all.

My husband and I have always known that we would tell our children about their donor mom.  Minimally, her medical history is important.  However, during our psych consult (a federal requirement for the use of donor and surrogate reproduction), the psychologist explained that talking about donation as early as preschool or kindergarten is beneficial as starting the dialogue early results in a better understanding and acceptance.  Children have no memory of not knowing.

The psychologist sent us a list of resources including children’s books like The Very Special Ducklings: A Very Simple Story about Egg Donation (only one of many donation and surrogacy children’s books on Amazon–seriously, go check it out–there’s tons).

very special ducklingsWe, of course, will have our egg donor’s profile which includes a three-generation medical history as well as personality and social traits.  (Watch for an upcoming post explaining in much more detail the egg donor database and profiles.)

However, we also learned that our clinic has an identity disclosure program.  In short, each donor decides if she is willing to disclose her identity to any potential offspring.  If she wishes to, children who are eighteen or older can contact the clinic which will provide the donor’s identity.  (The psychologist also assured us that the studies show no negative outcomes from choosing a donor who does not want her identity disclosed.)

This means my children may have the ability to meet their bio-mom without having to play detective like the kids from Generation Cryo.  And THAT, is very, very cool.