Today, I have the privilege of sharing with you a guest post!  This was written by Kirsten, she is the mother to a beautiful TS butterfly, Sienna Rain (who was featured in this post). 


TS Fact #2:  One of the common features of Turner Syndrome is incomplete sexual development and ovarian failure and infertility.


To be or not to be a mommy?

I admit I struggled with this question for a long time throughout my life. When I was five, I loved playing with my “babies” and practicing being a mom.  I would feed them, dress them and love them like they were real.  I grew up, went to college and got a job. The thought of having my own real babies at the time did not seem appealing.  I enjoyed life and still had a lot to do.  Being a mommy did not seem like a high priority on my list.

I did, however, give myself a deadline.  My plan was to become pregnant by 34 – if I was going to do it at all. It seemed like a reasonable age to become a mommy, and if I lived to 34 – since I had no real plans formulated after Y2K, since the general consensus was the world might end – seemed like a goal I did not have to think about. I would be 30 years old in 2000 and if I was going to die young and cool – it would be before that – the problem removed from my life, for the time being.

Despite the hype, we all lived through Y2K. I turned 30 years-old and was not as young and cool as I once thought of myself.  I had divorced my first husband and was living with my dog and two cats. Still the questions of being a mommy haunted me.  Not to where it consumed my thoughts in life, however it always seemed lingering in my brain wanting an answer I could not give.

I married a second time in 2003 and was enjoying life again. The same year, a doctor informed me about a health issue called endometriosis I was unfortunate enough to have.  This painful condition can cause severe fertility issues, and I had four surgeries in two years to help control it. I did not have the intense pain everyone talked about with the common side-effects–in my mind if the pain was not there, how could the fertility issues be there?  I was wrong.  And the dang mommy clock kept ticking in the back of my mind.

In Oct 2005, I had a myomectomy, which is a large tumor removed from my uterus growing into the walls and muscle tissues.  The doctors told me I should not even attempt to get pregnant for at least 3 months and when I did, I would have to have a C-section due to the possibility of tearing the uterus during labor.  The C-section I was happy about – I always thought getting and having the baby were more important than how it came into this world.  Something happened in November of 2005 – maybe it was a full moon or something – the clock won.  I decided to have a baby.  I admit I felt the weight of the decision gone in an instant and I was OK with my new goal: 35 – 1 year later than my original goal - however better late than never, right?

I quit taking birth control pills in Nov – 1 month after the myomectomy surgery. Always a rebel at heart, I guess. And I was pregnant by Jan 2006. After a 24 hour panic attack in my head: “who was going to pay for this thing and was this a good decision?” I embraced my new growing baby bump. I made a decision to be a happy pregnant woman no matter what for the next 10 months and start planning the parent I wanted to be.  I prayed I would have a cute little girl – I only wanted a girl – and she would be more like her dad than me. I was not the cute skinny cheerleader girl in school and was always jealous of those girls, besides, her dad is a nice average build – no significant fat and　stable metabolism. I wanted her to be cute and little to give her the opportunity to enjoy all those things I felt I missed myself.  She would be strong and independent and smart like her mommy. Oh yeah - and humble!  ;-)

My little princess came into this world on Sept 11, 2006.  She was early and impatient like her mother and perfect in every little tiny way. She was 5 pounds 4 ounces of cute. We named her Sienna Rain. I am around 5’5” on a good day and her dad is 5’7” – you can guess we are not professional basketball players.  My little peanut was just that.  She was small to begin with and stayed there. 　She always grew on a steady curve – only the curve was always on the one percentile or lower of the growth chart. 　

I never went back on BC pills. I wanted two babies to make my ideal family perfect. I tried and tried over the next four years and ended up having more surgeries and different check-ups to make sure the tubes were not blocked.  There was more money spent at fertility clinics than I care to admit.   Lots of visits and procedures involving drugs I couldn't begin to pronounce, let alone spell.  Every attempt failed. No second baby ever came into this world for us.  This made me a bit sad. My life was not over with only one child, and in reality my check book was heavier with only one child to spoil, however I felt a little sad not being able to give Sienna a sibling.

Over the next 4 years, Sienna's doctors expressed concern about Sienna’s height and weight – however their fears always subsided when each milestone became met as expected. Sienna is a fast learner, her speech was fine and we were also using the American Sign Language at home - all proper development according to her doctors.  They could see nothing else wrong with her other than her height– they watched and waited.  I had another deadline, also: if by the time she turned 5 and was not catching up to her peers in height, I would have her tested for something.  No one ever said Turner Syndrome to me, however in the summer of 2011 she had a blood test and the result was Turner Syndrome (TS).  The TS result explains the cute and short little girl I wanted in the beginning. My prayers were answered in a round about way!

TS girls come in all flavors with a wide variety of possible issues.  Short stature is 99% universal among girls with TS.  Fertility issues are the next highest side-effect. After that, heart and kidney issues can arise, and scoliosis is common also.  There are even some learning issues tied with TS in some cases.  TS girls can have only one X chromosomes in all or a portion of their cells. And many times if they have two X chromosomes, the second broken one is the cause of the different varieties of responses and conditions of the syndrome.

Today is 2012 and I have a 5-year-old girl with TS.  We started the prescribed growth hormone shots in Dec 2011.  She is a trooper.  The shots are a non-issue at our house, despite the horror stories out there and the anxiety this can cause to little ones.  The TS does not define us – it is something we have. Sienna is a healthy little feisty girl who tires out her mommy every day.  I had a hysterectomy in December of 2011 and found out how horrible my mommy parts had become.  The endometriosis did a number on my system, while those fertility issues I did not think I had, turns out I had more than anyone else expected.  There was a rare chance for me to have a baby, at all, and somehow Sienna made it here. She is my miracle.

She is also me circa 1975.  She is the 5-year-old me now playing with dolls, being the mommy.　 She sees her friends from daycare and school having little brothers and sisters.  She wants one.  This breaks my heart all the time. It broke my heart before the hysterectomy and the TS diagnosis　because I could not get pregnant again.  Today, it now breaks twice every time she brings it up because she knows her mommy’s baby parts are gone.  She tells me says she will have a baby in her tummy and it will be her little brother or sister.  Any older than 5, this would be a creepy story, ending in millions of dollars of therapy; however I understand her 5-year-old thought process.  She is trying and willing to help me get her a baby brother or sister.  She is such a sweetheart.

And now I worry about how I tell this sweetheart someday she may run into these problems herself.　 The doctors did see a uterus when they did the kidney ultrasound, and it looked normal for a little girl of 5.  However, at this age they cannot tell if her mommy parts will work as intended or even at all - she's still too young.  We will wait until puberty and see how it’s going. It’s not unheard of for a TS girl to get her period and breasts as non-TS girls would and to have a baby.  The chances are slim though.  Maybe it will be early ovarian failure or maybe her parts won’t work at all.  At best she will probably need whatever fertility options are out there in the future or she may need to adopt.

Every time she says “when I become a mommy…” I hope and pray she cannot decipher the look of pain on my face.  I cannot dash her 5-year-old dreams of being a mommy – it would do neither of us good.  She should have those same dreams and times to pretend as every other little girl does.  She should practice being a mommy today because we can be mommies in other instances.  My 3 dogs and 4 cats can attest to this now.   And she, as I have learned, will need all the practice, dreams, and those ways she pretends in her imagination when she becomes mommy age and starts to deal with all of these adult issues.  She will have to decide if she wants the responsibility in the first place and depending on what her body can or cannot do, may have to decide sooner than I wish.  To be or not to be a mommy?  This question will have a lot more meaning and choices for her, and possibly some heartache I don’t want to think about, and I hope I am still here as her mommy to help her through it when the time comes.