KS&A Chairman, Director Since 2006

Myra has her own interior design firm and does freelance writing on topics ranging from motherhood to shopping and decorating.  She’s also a full-time mother of six, including three adult children and three still living at home, the youngest of whom was pre-natally diagnosed as 47XYY.

Myra and her family live in Houston, where her husband is a partner in a prominent law firm and specializes in oil and gas transactions.

Serving on the KS&A Board of Directors since 2006, Myra is also active in volunteer leadership roles with her church, an adolescent drug rehabilitation center and her children’s schools.

Myra attended Mississippi University for Women’s School of Nursing and Atlantic Coast Institute where she received her degree in Paralegal Studies. 

When Michael and I married in 1998, I had three children and he had one.

Mine were in high school or late elementary and his daughter was in kindergarten. I always say Michael talked me into having more children! Katy was born 16 months after we married. We opted for pre-natal testing because of my age and the results showed she was healthy and normal. I got pregnant again when she was 6 months old and it was quite a shock.

I’d just had a difficult pregnancy with complications culminating in a c-section. Once again, I chose chorionic villi sampling (CVS) at 10 weeks gestation and two weeks later the genetic counselor called asking Michael and I to both get on the line.

The counselor said our baby was a boy and while a normal boy has 46 chromosomes, one X and one Y, our baby had an extra Y.  I remember feeling like someone had kicked me in the stomach. I heard the counselor’s explanation of 47XYY and what studies showed we might face.  I heard her explain the term we might hear or see on the Internet, the “criminal chromosome” and how that incorrect term had come to be.  But my strongest impression came from the look of pain on my husband’s face and a voice in my head screaming, “YOUR BABY IS NOT NORMAL.”

The last words the counselor said were: “This is a disorder that is manageable and where environment makes a huge difference in outcome.”  Michael and I held each other, cried and reviewed our options. I felt like I was an observer watching us discuss termination and if we did so, when and if I might be ready to get pregnant again.

Neither of us wanted to terminate, but there were some scary things on the Internet.

Only my mother knew of the pregnancy then, but I called my favorite aunt and uncle for support and guidance.  They have a son with special needs and they had walked the road we might be choosing.  Having five other children gave us perspective on what kind of guarantees you get with a child… Specifically none!

My then-sixteen year old son had struggled with depression the previous year, and was diagnosed with Attention Deficit Disorder at age 8.  Michael is a recovering alcoholic, as are my father and brother, and my older children’s paternal grandfather.  There is no test for those things.  Would we trade life-altering struggles and the strength we gained for a “perfect” child if we could test for those “defects”?

Our answer was no.

Once we knew we would continue the pregnancy, we tried to feel joy. We told our children, other relatives and co-workers about the pregnancy, but told no one about the diagnosis.  Without success, I searched the Internet for anyone who had a son with XYY, or had it himself; and emailed research hospitals asking for help in making such a connection.

Within days of the diagnosis, I began bleeding heavily while at work. My friend Cheryl, who was also pregnant, rushed me to the doctor Friday afternoon.  I told her of the diagnosis and said perhaps this baby just wasn’t meant to be.

Ultrasound showed I had a blood clot of softball size at the cervical opening and it might cause me to miscarry or it might be absorbed.  I was sent home to rest and told to call if the bleeding worsened or I had cramping. It was a holiday weekend and my older children had flown to see their father in Florida while my husband and his six year old were flying to a special father-daughter vacation.  I had planned to be home alone with our 8 month old, but my mother picked Katy up and took her on an out-of-town trip she had planned.

As I lay in bed, I thought that if Andrew (the name we’d chosen) was not going to make it, I wanted him to be surrounded by love in his last hours.  I talked to him and sang to him and at some point I began to tell him to hang on.  I told him about all the people who loved him and were waiting on him.

The next ultrasound showed him to be healthy, though I continued to spot for several weeks.  From that point, we allowed ourselves to fall in love with Andrew, though the XYY diagnosis and what we might face never left us.

One month early, and fourteen months to the day after our daughter’s birth, Andrew was born. He had his daddy’s dimple and was skinny, but healthy. He immediately became the adored baby in our family of eight. Many actors are the youngest child in a large family - they never want to lose that limelight and adoration! 

What did we anticipate after our diagnosis?  We anticipated a boy who was bigger, more active, more aggressive and who had speech, learning and motor delays with a shortened attention span. And what did we get? We got the sweetest, kindest, gentlest boy imaginable.

Andrew is bright and curious and loving, with the longest attention span of any of our children.  His teachers, friends and even total strangers remark upon his sweet disposition. He has been examined by a pediatric geneticist and tested by a developmental specialist and both pronounced him healthy, bright and advanced for his chronological age.

I know our story is not every XYY parent’s, particularly those with post-natal diagnoses. Ours is one face of 47XYY and the least known because of the lack of problems.

I am active on the XYY forum and quite aware of the range of issues our boys face.  Obviously, people diagnosed after birth had problems severe enough to warrant a karyotype. Those without symptoms rarely seek support and only a handful of pre-natally diagnosed XYY families post at all.  Of those, I am only aware of mild or moderate speech or learning delays.  Typically, pre-natal parents seek information at the time of diagnosis and are not heard from again.  Of the 6 or 7 with whom I have spoken, all have elected to continue the pregnancy.

Parenting Andrew is not without challenges. Andrew had severe food allergies and asthma as an infant, though he has been an otherwise healthy child.  He walked at sixteen months of age, later than any of my older children, yet within the normal range. He had drooling around 2.5 years of age, which we corrected, as the developmental specialist advised, by having him drink with a straw to strengthen the jaw muscles.  He had difficulty with a few consonants and still can not pronounce the “r” sound.  His speech delays were mild enough that we were advised not to address them, as many children his age still have trouble and we are just now at 5 years seeking therapy.

Physically, Andrew has a slightly prominent breast bone, a slight midline ridge down his forehead and his head circumference is at the higher end of the growth chart range. His height and weight are consistently around the 50th percentile, as was his older brother at this age.  My older son, now 21 years old, is 6’4” and my 23 year old daughter is 6’0”.

We are grateful that we had the gift of knowing Andrew’s diagnosis before birth. We played music to him and talked to him pre-natally, more than we would have made time for with 5 other children to parent.  We made sure to give him extra attention and intellectual stimulation as an infant and toddler.  At 2.5 years, we enrolled him in a small Montessori school to encourage gentleness and learning in a calm atmosphere.  He has taken swimming, gymnastics and art lessons, zoo classes and participates in t-ball and soccer leagues. We read to him several times each day and limit television, prohibiting any violent or over-stimulating shows, as we have with all our children.

I tried to be gender-neutral with my children, but knowing about XYY made us even more determined to avoid stereotypes such as “boys don’t cry” or “be tough.”  When Andrew wanted to dress up like a princess with his sister, I said: “He’s more male than most men, so just let anyone try to make fun of him!’’

Who knows if any or all of it has helped?  Andrew’s temper tantrums seem normal compared to his peers and siblings at the same age. I do think at times he has frustration connected to his speech difficulties and others not understanding him occasionally.  We have chosen to be completely open with friends, neighbors, relatives and teachers about his 47XYY diagnosis.  It is a chance to teach others and bring enlightenment to a disorder that has had a shameful perception due to misinformation. 

We have closely monitored Andrew’s development with his pediatrician, a pediatric geneticist and a developmental specialist.  All the professionals assured us that he was progressing normally.  The winter before Andrew started kindergarten, we attended KS&A’s [First Ever] National Conference on Trisomy X and XYY at the M.I.N.D. Institute in Sacramento, California.  During our one-on-one consultations with experts familiar in treating children with chromosome aneuploidies, we were advised to seek speech, physical and occupational therapy for Andrew.  They also pointed out his need for corrective orthotics due to flat feet and low muscle tone.

Based upon these insights, when we returned to Houston we had Andrew re-evaluated by his doctors and all agreed that indeed he did need these therapies and intervention services.  Each pointed out that without the XYY diagnosis, his deficits might have been overlooked in the hope he would outgrow them or “catch up.”  He has sensory integration issues that without therapy, would cause him to have difficulty writing and reading.  Within months of beginning therapy, I could see tremendous strides in his physical skills and fine motor skills. 

In talking to prenatal XYY parents, I admit that the most unsettling idea was that Andrew’s IQ might be lower than our other children’s or that he might look “different.” We believed ourselves to be progressive and without prejudices.  Though our fears were not realized, I like to think confronting this made us better human beings and am confident we are doing our best to avoid or minimize any adverse effects.

Though no parent chooses for their child to be “abnormal,” we now feel that Andrew’s XYY makes him special. We can’t see the future, but we believe the Chinese proverb “Within every difficulty lies opportunity.” Out of gratitude, we are committed to educating and assisting others in the hope that all persons with X and/or Y chromosome anomalies have a bright future.